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Saturday, November 7, 2009 4:17 PM CST

Wow - really? It's November already?? Crazy!

Emma has been doing well. She recently received a certificate for perfect attendance during the 1st quarter. This is quite an achievement for her!!

Josie recently started karate, so Emma has come to watch at the gym and then we have gone to Fuddrucker's (nice hamburger chain) afterward. Emma loves her cheeseburgers. This past week, she also had some of Mallorie's chicken. When there is a food that Emma likes, she will eat a ton of it. However, when it is a food she isn't interested in, she'll have no part of it! Emma has been on an appetite stimulant recently, which has helped increase her hunger. She had gone down a few pounds before the medication, but now she gained back those pounds. It is easy to see in her face, as her cheeks get bigger - you just want to squeeze them!

Emma has a couple upcoming appointments - she sees one doctor at Children's Hospital Oakland (Walnut Creek location) on Monday. She has seen this doctor once before. He specializes in scoliosis. She had x-rays done since her last visit, so it will be interesting to see what he has to say. She sees a new endocrinologist at CHO-WC the next week. Her prior endocrinologist left CHO, so she'll be starting with someone else. They are interested in her hormone levels, growth, etc. She sees her gastroenterologist in early Dec. I'm sure she'll be excited to see the weight gain. We will likely make another trip to Duke again at some point, as we need to discuss next steps regarding puberty, etc.

Emma continues her physical therapy (inside & out of school), occupational therapy (inside & out of school), speech therapy (school only), aquatherapy (outside of school), and horse therapy (outside of school). She is a busy kid, but she is also a happy kid. She has been more engaged in conversations, butting in sometimes, to remind us that she's listening. Her teachers and aides love working with her. We're very fortunate. Emma is really a blessing.

:)

In case I don't write again real soon - have a Happy Thanksgiving!!

Erin

Thursday, September 24, 2009 6:02 PM CDT

As I provided a link to this website today in a posting, I thought it would be a good idea to update the site!

Emma is doing well. She started 8th grade on August 31. She has 4 kids in her classroom. The teacher she had the prior 2 years moved to another state, so we were sad to learn of Mrs. Fox leaving. However, Mrs. Fox had done a job share with Mrs. D in the prior 2 years. So, now, Mrs. D. is the full time special day class teacher. She has an immense amount of experience & education, so we know that Emma is in good hands. We're also very happy that Mrs. Offee is Emma's 1:1 aide again. Mrs. Offee always makes sure that Emma is on task and Emma really enjoys her, as do we.

We had a pre-IEP meeting earlier this week, in preparation for Emma's 3 year IEP coming up in October. We met Emma's other teachers, met her new physical therapist, saw the school psychologist that we hadn't seen in years, saw her speech therpist, and more. It was a good meeting.

The five of us had the chance to go to Camp Okizu over Labor Day weekend. We were very lucky to get good traffic both directions - I was worried! Camp Okizu is a camp for kids with cancer (& in Emma's case, a similar life threatening disease). Camp Okizu is a beautiful facility a couple hours north of Sacramento. Emma has been to camp there over the past few years, while Josie & Mallorie have been to sibling camp there each summer. This was our first time attending family camp. There were plenty of activities to choose from, including some discussion time for the parents. It was good to share Emma's story with others & also hear their stories. Emma enjoyed a lot of arts & crafts over the weekend, some fishing, and more! We had some nice family time there, which we all enjoyed. Thank you Camp Okizu!!

Last night, we went to the special needs night at the Walnut Festival. The Walnut Festival is an annual festival where we live, in Walnut Creek. They open up the area where they have carnival rides to the families of individuals with special needs the night before it opens to the general public. They also served pizza, hot dogs, and drinks to the attendees. We were happy to see some familiar faces - Mrs. Heath (one of the aides in Emma's classroom) and the White Family -- Jackson White has Krabbe Leukodystrophy & underwent an umbilical cord stem cell transplant at Duke University soon after Emma. They live in the neighboring city, so it was good to see them again.

Emma has enjoyed being back to school. 8th grade! Hard to believe!!! =)

I am really excited about the upcoming month at work. I am the President of Chevron's ENABLED employee network (ENhancing ABilities and LEveraging Disabilities). It is a network for those with a disability, an employee who has a child or parent with a disability, & is also open to any employee interested. October is National Disability Employment Awareness Month, so our network has a few activities coming up. We have the AXIS dance company performing on the 5th (they have an ensemble of disabled and non-disabled performers), the Easter Seals coming on the 7th, we have service animal presentations, and also a couple presentations on nutrition and stress/mental health. Lots to look forward to!

Erin

Thursday, July 2, 2009 4:57 PM CDT

Hi --

I have a couple reasons for updating today....

Tomorrow is Emma's 14th Birthday!! Happy Birthday Emma. You are a beautiful young lady & such a pleasure to be around.

Emma had her first big adventure outside of the country this past week. My parents took all of us to Puerto Vallarta, Mexico. There were 21 of us in total (my siblings, their spouses & kids, my parents & grandmother). We had a fabulous time in Puerto Vallarta. I downloaded some pictures yesterday, so I'll try to post some this weekend. Emma had a great time hanging out with her cousins, having strawberry daiquiris, swimming in the pool and ocean, and much more. As we were at an all inclusive resort, she had fun ordering whatever she wanted any time of the day. She typically had a bean & cheese burrito for breakfast. She often wanted steak for lunch or dinner. As she hadn't been eating much before the trip, we allowed her to have more steak than we would normally, but she's on vacation, right? She had a blast, as did the other kids. Emma actually said that she wanted to move there! I think she likes the warmer weather & the humidity.

Emma starts summer school next week. She goes through the end of July. She'll have o/t, p/t, speech, etc. in the few hours that she's there. It starts at 7:30am, which will be early for all of us!

We hope that you all have a safe & wonderful 4th of July.

I also wanted to ask for your prayers for the daughter of a friend/coworker of mine. Her daughter Allison sustained a Traumatic Brain Injury on April 10. She is still in a coma. If you have a moment, please leave Allison a message. They regularly read the guestbook to her, in hopes that she will come back to them soon. http://www.caringbridge.org/visit/allisonangove

p.s. I updated a couple pictures, but they're GIANT. I'll try to fix that!

Erin

Thursday, February 19, 2009 11:58 PM CST

Today was Emma's 5 year Transplant Anniversary!! Can you believe it??

She brought Spiderman cupcakes to share with her class today (especially since her birthday is during the summer).

Greg took Emma to a movie this afternoon with some of her classmates. He loves seeing her there because she's just hanging out with her friends, giggling, and having fun like most teenagers do.

We're looking forward to spending some time with Emma and her sisters this weekend. Two weekends ago, my sister Nicki, her husband Lance, and their 4 boys were down for the weekend. The girls all had a great time during their visit, but it was pretty crazy with 11 of us in the house for 3 1/2 days! =)

Friday, December 19, 2008 2:17 PM CST

Really….how does time fly by so quickly??

Emma is doing pretty well. She had her g-tube placed in mid-November. She had her surgery at Children’s Hospital Oakland. I stayed the first night in the hospital with her. We played bingo on the tv and had a pretty good time, considering. Greg stayed the 2nd night with her, and then she was released on the 3rd day. She had the chance to relax and recover at our house over Thanksgiving break. She did great over the break! We have utilized the g-tube to supplement her fluid intake only. We only gave her ensure one time to try it out. Over the break, with more optimal fluid intake & substantial rest, Emma was more alert, she was recognizing when she needed to use restroom (with only 2-3 accidents in 10 days), and she was initiating more things on her own. She was walking better and communicating better. Greg documented some of this in a podcast on Emma’s Foundation website at: http://www.emmasfoundation.org/podcasts/emmaspodcasts/Podcast/Podcast.html

We were hopeful that some minor repairs during the g-tube surgery would help Emma’s vomiting, as they found some inclusions from her 7/04 gall bladder surgery while they were putting the g-tube in. She has gotten sick a couple times since the surgery, though. We’ll keep our fingers crossed that the vomiting stays to a minimum. She has been favoring one of her legs these past few days, too. We’re not sure why. Hopefully that passes soon!

The “Team Emma” call went well in late October. It was great to have everyone on the call at the same time and hear more directly from Dr. Kurtzberg and Dr. Escolar. Emma’s teachers, aide, school therapists, and private therapists were all on the call. I think Dr. K summed things up well here: Dr. K – prognosis – she will be relatively stable. She will learn slowly. She will look more impaired as she gets older (as she is learning more slowly compared to other kids her age). We need to keep from thinking that she’s getting worse. She needs to be compared to herself, instead of others. It’s a very different mindset when you think that she’ll continue to progress & learn slowly vs. that she’s getting worse.

There was a lot of good information shared during the call. I am really happy that Greg took the initiative to get this call setup & coordinate everything to make it happen.

Emma’s class is making sugar cookies today. Then, she’ll be on Christmas break, returning to school on Jan 5. She and her sister will be at their mom’s house through Christmas day at 1pm. Then, they’ll be at our house until they return to school.

Emma and her mother were on TV earlier this week. The story is available online. It is a story about a photographer who takes photos (& set up a nonprofit network of professional photographers who take photos) of seriously ill children.

Go to www.cbs5.com then, in the search area in the upper right, paste: 20Jefferson Award Winner: Karen Henrich


Can you believe that Emma was diagnosed 5 years ago – on December 30? It seems both like a very long time since her diagnosis & also a very short time.

I hope that everyone has a safe & happy holiday season. Be careful driving out there!!

Monday, October 6, 2008 6:10 PM CDT

OK - the longer we go without updating the more there is to update, so here it goes!

Emma turned 13 on July 3. She is very excited to be a teenager! She began 7th grade this fall. She has the same teacher as last year, Mrs. Fox, and the same aide as last year, Mrs. Offee. They are both wonderful & we're thankful to have both of them in Emma's life! Emma continues with her therapies with many of the same therapists - some at school & some outside of school.

The botox didn't seem to work so well for Emma. It weakened her leg muscles (which really is what it is supposed to do initially), but hasn't seemed to get back to where she was pre-botox. Usually, you'll see a dip in abilities, then recovery & the hope is that the end result is better than where you started. It can be a dosage issue, but that is still to be determined. We have exercises to do with Emma to help her alignment & also to help her build her core strength. Though she often has to work hard during these exercises, she still loves the one on one attention. As we're told the MRI is still stable, we're just trying to figure out what we need to do to keep Emma's abilities stable, too. As she's put on some weight, it is a little bit harder for her to get around. We do have some video comparisons over the years, since transplant (Feb. 04).

We have a call scheduled this Friday for "Team Emma" to talk about her current state and what we can do to best assist her. Dr. Kurtzberg and Dr. Escolar will both be on the phone, as well as Emma's local physical and occupational therapists, and her teachers and aide. As some decisions need to be made regarding puberty, which likely isn't too far off, we want to do a 6 month push - to have her at her optimal health- before making any decisions. We do plan to have her get a g-tube. Dr. K has been clear that this is not because she is getting worse. Emma takes a very long time to both eat & drink. We know she is not getting optimal nutrition, calories, nor fluids at this time. The g-tube should allow her to get what she needs and allow her to get stronger. It will be used to supplement her regular food & drink intake.

Greg thought of putting this call together so that everyone is on the same page, knows where Emma is currently at, and our goals for the next 6 months. I'm sure it will be a very informative call for all involved.

Emma is also scheduled to see a pediatric endocrinologist in November. She hasn't grown much since transplant, so we'll figure out, with that doctor's help, whether Emma needs to be on growth hormone supplements or what.

Emma is happy to be back in school with her classmates. She had a couple of familiar classmates returning from last year. Emma also had a good summer. She again went to Camp Okizu for a week. We also took Emma and her sisters back to Minnesota again for about 10 days. We stayed with my aunt & uncle, who took wonderful care of us! The girls fished a lot and enjoyed going out on the boats. Emma caught a lot of fish! We were also able to see many more of my relatives at another party. When we were back in the Twin Cities, we went to the Mall of America for 2 days. Emma found a pink Roxy purse she just loves! She went on some of the rides in the amusement park in the mall, too.

There's a small update on the past few months. I'll try to update again next week, after the call.

Thanks for checking on Emma. Sign the guestbook if you have a chance. =)

Erin

Friday, June 13, 2008 3:46 PM CDT

GREAT NEWS!!!

Emma's MLD has not progressed! Yeah!

We finished up at UNC on Wednesday morning, then headed back to Duke for Emma's MRI. She did a great job, needed no sedation, and finished about 35 minutes after we went in. Greg was shocked, as it usually takes much longer.

We loaded Emma up on liquids before heading to her blood draw after lunch on Wednesday. She also did a great job there. They had no problems getting her blood, which they usually do.

After the blood draw, we headed to the 5200, where Emma saw her primary nurse Jennifer, and where we met Sam Spraggins and his parents Rick and Jolene. I think it was great for them to see Emma and how well she's doing. We walked around the unit a bit. Emma remembered the halls, the rooms, and playing basketball in the halls.

We kept Emma up late on Wednesday night since she was supposed to sleep during her Thursday morning tests. She was pretty tired when she got up on Thursday. She did a good job during her Baer/Vep and EEG. She didn't fall asleep and they didn't give her any sedation, but they were able to get what they needed from the tests. We left the hospital at about 1:00 to get lunch. Emma didn't quite seem herself when we got to the restaurant, then she threw up! We got our food to go and headed to the apartment so she could rest a bit before seeing Dr. K in the afternoon. We got to the apartment and she threw up again. She was able to keep down a couple hydrocortisone pills and she laid down for a bit. We weren't able to reschedule with Dr. K, so we had to get her up in time for our 3:30 appointment. We got to the appointment. Emma was pretty miserable. After sitting there a few minutes, Emma threw up there, too. We had a nice conversation with Dr. K, then headed back to the apartment. Emma threw up once more. We gave her 4 hydrocortisone pills at about 7:15 and she headed to bed. She woke up this morning a different kid - she was joking and happy again. Whew!

Dr. K had good things to say --

Emma's MRI is unchanged.

She didn't have all blood tests back, but most looked great. There was a screening for growth hormone that showed she needed further testing, so we'll have to find a pediatric endocrinologist back home.

She had concerns about Emma's scoliosis, but felt that it's still at a manageable stage. With p/t, some of the scoliosis could be fixed. If not, she could need surgery in the future. However, then she likely wouldn't grow.

She "fell off" the growth chart during this visit. She had previously been hovering at the 5% range. Further testing with her growth hormone will help decide what future steps are needed.

They measured Emma's bone age by looking at the x-ray on her hand. Her bone age is under 8 years old, which is good. That means that she has more time to grow. Emma is currently about 4'5". If she were to continue the same trending (at the 5%, with growth hormone if needed, or something else), she may end up at about 5'1".

We brought up the fact that Emma doesn't have much liquid during the day. Dr. K said that Emma needs to aim for about 40 ozs of liquid per day - 30 at a bare minimum. Her low levels of fluid could be contributing to her fatigue, etc. Dr. K said that we should again give some thought to a g-tube for Emma. She said that it is not a negative thing, it does not mean that she's doing worse, etc. She said that it could make things better for Emma by supplementing her meals and liquid intake. It could also make it easier for the two households by increasing the speed of her intake, while ensuring she has proper nutrition.

A common theme, also mentioned by Dr. K, is that Emma needs to keep moving and do more on her own. We need to help her talk through the gross motor planning and assist her at the beginning sometimes (as her planning and initiation skills are lacking), and stay nearby so she is safe, but she needs to do more for herself to help build her skills and her confidence.

We told her that the cheer was on a hiatus and asked about continuing. She said she should definitely do it. She said we need to be creative in keeping her moving & that one therapy session per day isn't going to be enough. We need to get her back & core strengthened and may want to try theratogs (she has tried a version of these before, but we may try the full body version).

We discussed puberty briefly. Emma's hormones don't show that she's starting puberty yet, which is good. We're going to have a future phone conversation with Dr. K and Sam to discuss possible next steps.

Overall, it was a great conversation. We were very pleased to hear that the MLD had not progressed and that Emma's walking challenges can be improved with therapy and intervention.

Emma had an eye appointment this morning. We were there for about 3 hours. Things seem generally unchanged. The doctor suggested that Emma didn't need prescription glasses, but rather just needed non-prescription sunglasses when outside. She said we should be spending $20 rather than $200. Sounds like a plan. =)

We're headed home tomorrow afternoon.

Erin, Greg, & Emma

Tuesday, June 10, 2008 6:52 PM CDT

As expected, we've had a busy couple days.

Yesterday, we were at Duke. They started by getting Emma's height and weight. She hasn't grown much since transplant, so they may have some thoughts about that. She had pulmonary function testing, which she did well with. She then had an echocardiogram. It was pretty cool seeing her heart on the computer screen - we saw blood moving in and out of the different chambers of her heart. She then had a chest x-ray. They also added on a bone density x-ray while she was there. Sue was available to do Emma's history and physical exam yesterday. We spent about an hour or so with Sue going over medications, changes since the last appointment, etc. Everything went smoothly, and more quickly than we had expected. Greg and Emma went back to see Kung Fu Panda in the late afternoon and grabbed chinese food on the way home. We were here at the apartment the rest of the day and got Emma to bed early since we had an early start planned.

Today, we started at 8am in Chapel Hill (that's 5am California time!). Emma did part of her standard evaluation at UNC, but then had to leave due other appointments which were scheduled. We were able to watch her language testing from behind a one way mirror. The best part of the time at UNC today was the time spent with the physical therpist. She was able to address Emma's difficulty with walking. She pointed out that Emma favors her right side, which causes her to lean that way, and also causes her to struggle with walking. She isn't shifting her weight onto her left side and really needs to work on lengthening her left side. She gave us some exercises to do to help Emma while she is walking, sitting, moving from floor to sitting, etc. It made a lot of sense, so we're hopeful that with both homes working on these exercises, in addition to her therapists, that Emma can make some good progress over the next few months. One of the big things that the therpist mentioned is that Emma needs to do more on her own. This part will take as much training for the adults as it will for Emma! Dr. Escolar saw Emma before we left today and wrote out a prescription for Emma's botox shots, which we headed off to next.

Dr. Howard, at the UNC Hospital, first administered Emma's nerve conduction test, then her botox shots. The nerve conduction test was not fun for Emma and she started to cry a bit during the last few. =( She pulled herself back together and the doctor then worked on her botox shots. He used a freezing medicine so that Emma wouldn't feel the shots. She didn't even know that the first couple had happened! They put botox in her left and right medial hamstrings and also in her lower left leg, to loosen her heel cord, which should help her to walk more naturally. The botox will loosen up some muscles, which should allow her to more range of motion, and will allow therapists to work on her gait. The effect of the botox is typically best at about a 1 month period, so we already have a 1 month follow up scheduled at Stanford. The effects of the botox usually last for only about 3 months. We're hopeful that the botox helps her. Dr. Howard was great with Emma. We couldn't have asked for more. He was playful and having fun with Emma, which is great to see from a doctor with over 30 years at UNC! He has been administering botox for 15 years, which is why Dr. Escolar sent us to him. He's the best!

Since we were running from appointment to appointment today, we didn't have time to grab lunch until 4pm! We're back to Dr. Escolar's office at 7:45am to finish the tests there. Then, we're off to Duke to get Emma's MRI. She'll also be giving blood tomorrow so that they can run all of her labs. We're planning to meet Kelly with Hunter's Hope tomorrow night for dinner. We have also been in contact with Sam Spraggins' mom. Sam is currently undergoing transplant at Duke for MLD. We wanted to have Sam's parents see Emma, as she is such an inspiration to so many. =)

Monday, June 9, 2008 10:15 AM CDT

Hello - We made it to North Carolina - not without some adventure, though!

We arrived at the San Francisco airport at 8:15 on Saturday morning. We checked in without a problem and waited in the American Admirals Club for our 9:30 flight. Soon after we went into the lounge, our first flight was cancelled (SFO->DFW). They re-routed us through JFK (New York) on an 11:15 flight. We were at JFK long enough to grab some dinner (as it was about 9pm EST) to bring with us on the plane. The lady who helped us at SFO asked if we minded smaller planes - we didn't realize it would be SO small. There were only 13 rows - with 1 seat on one side & 2 on the other - 37 passengers in all! The plane itself wasn't so bad, it was the weather that we were slightly worried about. We taxied for about 35 minutes, when the wind kept getting worse. Before we left, it was moving the plane! Then, the lightening started in. About 10 minutes before takeoff until the time we took off, we saw lightening every 5-8 seconds! Fun stuff.... Surprisingly, the flight was pretty smooth.

We arrived into Raleigh-Durham at about 11:45pm. However, only 2 of our 3 pieces of luggage made it. Emma's pink Hummer suitcase didn't make it. We got our rental car & headed to the apartment (Thanks again Hunter's Hope - it's great!). We got here at about 1am. Emma was very tired (it was 10pm our time - but still 2 hours past her usual bedtime!)

We got moving late yesterday - in time for lunch at Fuddruckers. We picked up a few things for the apartment at Kmart and headed to the movie theater. We were seated to see Kung Fu Panda, but Emma had an accident that soaked through, so they gave us tickets for a later show.

We went back to the apartment & watched National Treasure 2. Emma's suitcase was delivered to the apartment. In the later afternoon, Amber & Zoe came over to drop off some movies that were in their Hunter's Hope apartment (Hunter's Hope has 3 units here). Zoe has Krabbe (a "cousin" leukodystrophy to MLD). She was transplanted in her first month of life, nearly 3 years ago. She seems to be doing pretty well & it was nice visiting with them. They are from Iowa.

We get started at 12:30 today where Emma is weighed and measured for her studies this afternoon. At 1:15, Emma has an echocardiogram, following by pulmonary function testing at 2:15. Following those appointments, she'll have a chest x-ray. Sue will also be seeing Emma today for an updated history & physical. So - it's a busy day.

Tomorrow, we head to UNC where Emma sees Dr. Escolar and her team. She'll also see Dr. Howard at UNC for her nerve conduction studies and will likely get a botox shot for the first time. Dr. Escolar is hopeful that the botox will help her walk better. We already have the 30 day followup scheduled at Stanford to review the results of the botox.

So - that's enough for now. We'll try to report back regularly this week!

Erin, Emma, and Greg

Friday, May 2, 2008

REMEMBER TO CHECK OUT EMMA'S CHEERLEADING PHOTO!!

Emma's swallowing study went well at Children's Hospital Oakland. After Greg and I talked to the Occupational Therapist about Emma's eating habits, Emma went into the radiology area. She first had a radioactive sugar cookie(!), then had a thick radioactive chocolate concoction, then a thin radioactive chocolate concoction. (sounds yummy, huh?!?) Greg and I were both able to stay in the room (with our lead vests on) while Emma did the tests. It was really neat to see. We watched on the screen (esentially looking at a "skeleton" view) while she chewed and swallowed. The doctor and nurse were so excited to have her in there since she was able to talk and communicate. Most of the kids that are there aren't able to do so. They found no pooling and no aspiration with either the barium cookie or the "nectar" consistency. In one of the swallows with the thin liquid, the liquid coated her vocal cords, but then she cleared it. She had no problems with other swallows of the thin liquid. There is a thickening agent that can be used for thin liquids (even water!), but at this point it is up to us whether we want to thicken the water or not. (Can you imagine thick water??) The OT felt that if she is coughing at home, it is a good sign that she is protecting her airway. They also felt that she may cough more at home because she may be distracted and not paying attention to her swallowing. Overall, it was a good appointment and it went more quickly than we thought it would.

Greg and I are scheduled to take Emma to Duke June 7-14. After my last CB posting when I mentioned that we were looking at early June, I was contacted by Kelly with Hunter's Hope who mentioned that they have Hunter's Homes - furnished apartments in the Durham area for those with Leukodystrophies there for transplant or for post-transplant visits. Thank you Kelly & Hunter's Hope! (Please check out www.HuntersHope.org if you haven't already. It is a great organization.)

Emma has been doing better with her toileting recently. She went through a rough few months, but things seem to be clicking a little better recently.

Emma's cheer team starts up again on May 18. I have shared information about the team with a number of local moms with special needs kids. Hopefully the team continues to grow!

The Rainbow Walk of Heroes is being held tomorrow. http://www.rainbowofheroeswalk.org/. Today I sent a donation to support Sam Spraggins' Team (Amazing Sam Team). Sam is a young boy with MLD who has recently arrived at Duke for transplant. If you have a chance, please leave them some words of encouragement on their CB guestbook (http://www.caringbridge.org/visit/samsstory/)

Take care & stay safe~
Erin

Sunday, April 20, 2008 8:45 PM

Sorry for the delay in posting…I know when I have personal requests via email & in the guestbook, that it's been too long...

ALSO - A CHEERLEADING PHOTO IS POSTED!

Emma has had her ups and downs over the past couple months. Some days are better than others. We think that she may be adjusting to the lessening of her hydrocortisone. When she takes higher dosages, she is alert, engaged, and like a different kid. That would be great if she could take the higher dosages long term, but she can’t. It isn’t good for some of the organs and also causes muscle weakness. We have noticed difficulties with her strength and some of her abilities. This could be attributed to the hydrocortisone. We’re not sure. Greg has video of Emma at p/t over the last few years. This is where it is most noticeable that her skills have declined from where they have been. Greg provided this information to Duke, UNC, and her local therapists. We’re looking at taking Emma back for her annual tests in June.

We had Emma’s annual IEP this past week. Emma will continue in the same school with the same teacher and aide next year. She will also continue with her p/t, o/t, and speech therapy at school. She had adaptive physical education (APE) this year, but she wasn’t able to participate much in PE due to safety concerns, and they felt that the APE was a duplication of her p/t. So, the APE is on hold for now. She can utilize APE again in high school, if it makes sense to do so. The APE teacher said that in high school, many of the special education children have either dance, aerobics, or weight training. The kids are able to be more involved, and he’s able to assist, too.

Emma had her end of year awards ceremony for cheer one week ago. In addition to receiving another medal for participating all year, she also received the most improved award for her team. Jodi, her coach, was so proud of her for being able to jump once or twice during each of the last few competitions. They are looking to grow the special needs team, so it looks like Emma will have some more friends in the upcoming year. Though there is often not much interaction between the girls, there is an underlying camaraderie, which is nice to see.

Emma often asks to have the girls in her class over to play. A mother of one of the girls has arranged some movie dates to which Greg has taken Emma. Again, Emma enjoys the friendship and “normalcy” of time with her friends.

Emma seemed to be more alert this weekend. We all attended Mallorie’s end of year pom (cheer/dance) party on Friday night, where Mallorie also won most improved for her team. Yesterday, we celebrated Josie’s birthday with her friends. It was a busy weekend. We took some time to relax today.

Emma’s physical therapist provided some exercises to do at night with Emma to continue to build her strength and keep her engaged. One of them that we’ve been working on is having her crawl. She has to crawl with a certain arm& leg pattern, then work to being able to do it on her own. Although it is a great activity for her to do, she often complains about having to do it because she, “is not a baby.” I do find it really interesting working with Emma on things like crawling, or removing a shirt, or putting on a sock. We are all so used to doing many things, they obviously come naturally. But when it comes to many things, I really have to stop and think….ok – where are my legs in relation to my arms when I am doing this activity? What do I do first? What do I do next? What we have found recently is that Emma knows what muscles she needs to move, but has difficulty initiating the movement itself. Often she’ll say, “ok leg – move.”

Emma has a swallowing study at Children's Hospital Oakland on Tuesday. When she was having eating and vomiting issues in the fall/early 08, this was recommended. Emma does choke sometimes on water and thin liquids, so they'll be taking a look at this. Her weight has been stable for a couple months - at around 70 lbs. She has been on the periactin (appetite stimulant), then off it, and now back on it again. Its effect has waned; she often doesn't have much of an appetite. Maybe we'll have to go back to megace again. Who knows?!? She has not vomited for a couple months, though, so that is great news!

When we go to Duke this June, we hope to find that Emma’s MRI hasn’t changed & that maybe we just need to change what we’re doing – at p/t, o/t, school, home, etc.

Erin

Wednesday, February 20, 2008 8:11 PM CST

PHOTOS UPDATED!!


I know I owe you all a photo of Emma in her cheer uniform....but here are a couple other photos for the timebeing.

Emma watching TV on the exercise ball. She sits for about 30 minutes. It is great for her core strength, which the therapists want her to work on.

Emma at her gait analysis at Stanford. Doesn't she look like a Christmas tree??

Emma is heading to another cheer competition in Fresno this weekend. It will be a bit of a drive - 3 or so hours. Hopefully everything goes well!

Erin

Thursday, February 7, 2008 0:25 AM CST

Emma has had a number of appointments and a few hospital stays since our last post. Emma has had appointments at Stanford, locally and and Children's hospital Oakland.

Emma's appointment at Stanford went well. She actually had two. The first appointment was with the head of Neurology. Dr. Sanger had seen Emma three months previously. Upon seeing Emma and doing an examination, Dr. Sanger didn't see any change in Emma. This was nice to hear.

Emma's appointment at Stanford gait clinic was really cool. Basically, Emma had reflective lights put on her and she was asked to walk back and forth in a room. The computer turned her into a stick figure so that the Doctors could see her movements. If that wasn't cool enough, they then hooked her up to some muscle recording devices and had her repeat her walking. I guess they take her measurements, her stick figure and then correlate it all into a video and computer animation that truly reflects how Emma walks. They would then be able to know how to assist Emma in walking better. Cool huh? What was interesting was that Emma had great balance. I have to see the results of all of this to fully understand what they mean.

I stayed overnight with Emma at CHO (Children's Hospital Oakland) after they did an Endoscopy and they were doing acid reflux monitoring and more...

After the past month of hospital visits, new doctors getting to know Emma and countless tests. the prelimary news might be that Emma needs an appetite stimulant, to gain strength and work on gait. We won't know if there is any further MLD progression until we quantify that at Duke (a trip in the next few months).

All in all, she seems to be doing better and gaining weight. In fact, she is gaining too fast so we have to watch what she eats. As a side effect, she is eating and drinking a lot so accidents have gone up. I'm not sure if this is in proportion or not.

As we learn more, we'll let you know.

On another note, we do have video of Emma doing PT and walking year by year for the past 5 years. I hope to put together a video showing pre-transplant up to present to give others a view into Emma's experience.

:)

Greg

Friday, January 25, 2008

Sorry - we didn't mean to leave everyone 'hanging'! I have been traveling for work this week, and intended to post before I left.

Emma has been stable, eating well, and has been back to school. She has gained 8 lbs. since Dec. 16, which is wonderful. She has had a lot of followup appointments to try to get more information. There was an appointment earlier this week with a doctor at Childrens Hospital Oakland to discuss the g-tube. As we had hoped, they want to see what happens with her weight before moving forward with that. If she weren't eating and were not gaining weight, they likely would have looked at putting at g-tube in very soon.

There is another appointment at Stanford today to meet with the Neurologist that I had taken Emma to see in Sept. Dr. Jeiven suggested having a west coast neurologist, so Dr. Sanger looks like the best option for Emma, as he specializes in neuromuscular disorders. When Emma and I met Dr. Sanger and his NP, Sara, they seemed to be a good fit for Emma. Dr. Sanger also talked to Emma's 'east coast' team, which we appreciated.

Emma has another appointment next week at Stanford to do a gait analysis. They provide a comprehensive gait evaluation for those with neuromuscular disorders. With that information, we'll have a baseline if Emma gets botox in her legs. The information is also helpful in physical therapy, orthotics, etc.

I believe Emma is scheduled to do the gastric emptying test and a couple other tests again. The doctors are just having some difficulty figuring out why the vomiting happens. We've been trying to figure out any correlations - looking at when it's happening, where it's happening, what she's eating, what she's drinking, if there are other environmental factors, external stimuli, stress, or any other changes in her life since the vomiting has been happening more frequently, etc.

Emma has a cheer competition again this Sunday, so hopefully she stays well and is able to go.

Thanks for stopping by and for your guestbook messages. Emma likes to read them!

Erin

Wednesday, January 23, 2008 7:03 PM CST

Emma is back home and eating well right now. We met with a GI surgeon to talk about putting in a G-Tube. Emma is currently gaining weight and we are tracking that. Emma also has several more tests over the next few weeks. If she continues to gain weight and the tests go well, we won't need the G-tube.

Emma's throwing up is an odd problem. She is here half the time and I have only seen her throw two times the past year.

Anyway, she is eating and drinking well right now.

Wednesday, January 16, 2008 4:42 PM PST

Afternoon update -- Emma is out of the hospital. She looks tired, after a long night then day at the hospital. Dr. Smith hadn't talked to Dr. K or Dr. J (gastroenterologist) yet, but hoped to this afternoon.


Wednesday, January 16 - 12:00 PM PST

After having a stellar week last week, Emma is now back at the hospital. She got sick at Sam's house last evening, then a couple more times during the night. She is currently at the hospital where they gave her a shot of hydrocortisone, an iv, and are running some tests. Dr. Smith, oncologist, thinks that her intestines may be paralyzed. The team will be talking later today, so hopefully we'll know more soon.

Erin

Monday, January 14, 2008

Emma had a great week last week. You would never know that she was in the hospital the prior week. She had no vomiting & has been eating like a horse! Since mid-December, she has put 10% of her body weight back on. She went from just under 60 lbs. on 12/16/07 to 66 lbs. this morning! The combination of the cortisol and the periactin (used for her as an appetite stimulant) seems to be working. Yesterday, she was insatiable! She had 2 Carnation instant breakfast shakes followed by 2 chocolate chip pancakes for breakfast alone! Her tummy was quite full & sticking out!

She competed in a cheerleading competition at UC Davis yesterday. She falls behind during the moves, as it goes so quickly, so we had her focus on the verbal cheer section. She has quite a loud voice when she chooses to use it, so we were using it for a good cause in this case! Her team did well and received a medal after their performance. She was so proud. She started calling everyone to tell them about her day on the drive home from UC Davis. Her team practiced on Saturday and then went to lunch afterward. There are 6 girls on the team. They all sat together at the table with the parents on the other end. It was nice talking to some of the other parents. We talked about Special Ed services, the regional center, and more. I found out that the mom of one of the other girls works for Chevron in the same location that I do. Small world!

The doctors are working on adjusting Emma's level of cortisol to something that will work for her. They are hopeful that having the right cortisol level and putting on some weight will result in Emma NOT needing a feeding tube. The only problem we had last time when she gained weight quickly was that she had a hard time adjusting to her extra weight. She became a little more unbalanced. So, she'll need to walk on her own and use her walker to continue to build her strength and keep her steady. We're only supposed to use the wheelchair/cruiser when she is exhausted from walking on her own or using the walker. It is tempting to us to hold her hand when walking, but we've been told it is really counterproductive and not good for her.

We're hopeful that Emma will continue to do well and the feeding tube won't be needed. It has been great to have Emma's cross-country medical staff working together. I think it was Dr. Smith (Emma's local oncologist) who said, "Team Emma" when Sam, Greg, and I were moving into another room in the hospital recently. With Emma's new gastroenterologist and west coast neurologist, Team Emma seems to keep getting bigger by the year!

Erin

Monday, January 7, 2008 11:11 AM CST

We ended up having a busy week last week. We met with the gastroenterologist on Wednesday morning. She wasn't convinced of the SMAS, mentioned last post, so she had been trying to research further. She thought that Emma was experiencing some swallowing problems and ordered a swallowing study. Due to Emma's continued congestion, she ordered a chest x-ray. I think that would also help to show if Emma is aspirating. The g-tube consult will be scheduled with a surgeon at Children's Hospital Oakland. Emma would be able to continue eating, but would have the g-tube available to supplement her eating, which should give her more nutrition/calories, lessen the risk of aspiration, and allow her to get through a meal more quickly (with supplementation).

Before Christmas, Emma started on Prevacid and Periactin. The periactin was used to stimulate her appetite, similar to megace, that she's previously taken. It has seemed to help as she was getting through meals more quickly, without us having to remind her to take a bite every minute.

On Thursday morning, Emma vomited twice at her mom's house. Due to her low weight already, the threat of dehydration, and a gastric emptying test which was already scheduled for Friday morning, she was admitted into the hospital early Thursday afternoon. Once she was getting fluids, she was bright, alert, and talkative. While waiting for the doctors, Sam, Greg, Emma, and I all had some Mexican food. Emma ate a whole bean and cheese burrito and kept it down in the afternoon. Then, that evening, she ate "sushi" (about a cup full of crab salad, used in California rolls) with no problems. Emma insisted that I stay with her overnight in the hospital on Thursday night, even throwing in a, "you're the best stepmom in the whole world," to twist my arm! She's so funny!

Dr. Jeiven, her gastroenterologist, came by to see her at about 9pm. With the fluids and some food in her tummy, that was the most alert Dr. Jeiven had seen her. Dr. Jeiven talked to Greg and me, then asked Emma a bunch of questions about swallowing, choking, etc. She had communicated with Dr. K a bit, but planned to follow up more, especially about Emma's cortisol supplements. Dr. Jeiven said that looking at Emma there in the hospital bed, you'd never think she's been sick a day in her life. She just stares at Emma every once in a while, telling her how prettty she is.

Greg headed home after Dr. Jeiven left. Emma and I went to bed soon thereafter. We were awoken a few times in the night when the nurses came in to take her vitals, etc. Greg came back in the morning with coffee and scones. Emma then headed to the gastric emptying test. She drank some cranberry juice containing radioactive material, so the machines could track the material going through her digestive system. Emma had to sit still in an MRI-type machine for an hour. Luckily we had brought her video ipod with us, so she laid very still for the entire hour. While we were in the "nuclear medicine" area, Greg received a call from Dr. Jeiven. She had contacted Dr. K. They thought that many of Emma's current symptoms could again be attributed to her cortisol level. They decided to up the dosage and frequency. She was released from of the hospital soon after finishing her test.

We heard from Dr. Jeiven later on Friday when she said that the fluids did not empty properly during the gastric emptying test. So, now they'll schedule an endoscopy to see what is happening. They've prescribed reglan to assist things in moving along the digestive tract. So, I guess there is more to come regarding that. A consultation has been scheduled later in January with the surgeon regarding the g-tube. We're hoping that the cortisol adjustment, periactin, and knowing more from the endoscopy can help increase Emma's weight on its own. But, we just don't know yet.

Emma is back to school today, after Christmas break. Hopefully the endoscopy will be scheduled soon so we can know more.

Erin

Saturday, December 29, 2007

A Belated Merry Christmas & a Happy New Year to all!!!

Emma has a new challenge. Would you believe it is another rare problem, that we've been told is unrelated to MLD? Superior mesenteric artery syndrome (SMAS) is an obstruction at the third portion of the duodenum by compression between the superior mesenteric artery and the aorta. The duodenum is the first part of the small intestine. So, after leaving the stomach, there is a very, very small passageway for Emma's food to get through her digestive tract.

This does help explain some things. Emma has lost a lot of weight in the past few months, about 12% of her body weight, putting her back under 60 lbs. Also - Emma has been vomiting sporadically, usually every couple/few weeks, but recently it has been more often. Finally, her appetite has diminished greatly. These could all be a result of her SMAS.

What do we do now? Currently, Emma is taking Prevacid and one medication to help stimulate her appetite. The first time we tried it last week, she ate over 3 pieces of pizza. We had to keep her from eating more, as we didn't want her to vomit. She kept it all down, with no problems. Dr. K is recommending that Emma get a g-tube (type of feeding tube) to ensure that Emma gets the nutrition she needs. There is an appt. on Jan 2 to talk to Emma's new local pediatric gastroenterologist, who helped to diagnose this latest problem. So, we'll know more soon (and will try to post more promptly). From what we've seen online so far, it seems like this is a manageable problem, so we don't want anyone to worry too much.

Besides Emma's recent problems described above, she has been doing pretty well. She has been communicating more fluently, she has been doing well at school, and has been continuing her cheer participation. We need to get a picture of her posted in her uniform. It is really cute.

We had a nice time at the Fitzgerald's annual gingerbread party. Our theme was barnyard, so we painted the gingerbread red with white trim. Emma helped by placing some of the animals around the barn. We won first place! The girls were quite excited, as they also won first place last year. Mallorie was definitely the creative genius of this project.

We also visited the Fitzgerald's house briefly for their open house on Christmas Eve. Then, we headed to Uncle Steve & Aunt Anne's house located about 1/2 hour away. We saw aunts, uncles, cousins, and met new cousins (including baby twins). We all participated in a 'secret santa' type gift exchange. Emma got a little cat that walks and meows. She seemed pretty happy with that.

On Christmas morning, Emma found that Santa gave her a video Ipod. Santa knows that Emma has to wait a lot for appointments, flights, etc. She received some other nice gifts and money, too, which she looks forward to spending. The girls' mom picked them up on Christmas day and they headed to Disneyland. Emma got sick that night, and one other night during their trip. They're safely back now. Emma is with us tonight. She had a good dinner and was in bed by 7pm. Hopefully a good night's rest will do her good.

We'll update next week when we know more after our appointment.

Sunday, October 28, 2007 11:22 PM CDT

We’ve been away and I guess in some sense that is a good thing. We returned from Duke and all of Emma’s reports are normal or I should stay stable from the last visit. However, since our return I am concerned Emma is having more balance/gait issues. We are getting a local appointment with the gait clinic at Stanford for more assessment and work with Dr. Escolar (more to follow when we know). I actually also got Emma a gym membership and we are going to start some light resistance training to see if that will help with some of the strength issues.

I guess I was inspired to write something tonight because I witnessed something amazingly good today. Emma has been practicing cheerleading in a special needs group. A gal named Jodi runs it and works at a local cheerleading school. Along with Jodi, other girls donate their time each week to work with the kids to get them to perform a simple routine. Tonight was their first competition and it wasn’t a small one in my mind.

We went to Sacramento to the Memorial building for our first cheerleading competition. After hours of competition, the special needs team was the last team for the night. They came out onto the floor in front of a large venue. I was so nervous that I was shaking at what would happen next. What happened next was that I was emotionally overwhelmed by the loud cheering from all the other teams and stadium audience. I instantly shed a tear. As they performed their routine, everyone in that place cheered them on. I can’t even begin to explain the look on Emma’s face. She was so proud of herself. She was beaming from ear to ear.

When the awards were presented, they won first place in the special needs category with a “perfect score of 500”. I think that is when I lost it and began to sob. I looked up as Emma was with her team mates, a first place trophy and all of them making a number one sign on their hands chanting, “we’re number one!”. It was so emotional because Emma has been so disconnected from school, friends and so many things. Today I witnessed Emma clapping and cheering for her other teammates from her school. I witnessed so many people encourage the special needs team with so much positive enthusiasm. Emma has somewhere she fits in. She has a place. She is finally part of something.

I apologize if I am very emotional, but there has been such a struggle to find anything where Emma could participate in some fashion and actually be a part of something. I can’t thank Jodi and the girls that volunteered to help every week enough! You are truly special people.

I’ll post her performance on her webcast in the next week...

Wednesday, July 18, 2007 8:35 PM CDT

Greetings from North Carolina………yes…North Carolina! Greg and I are here with Emma. Over the last couple months, she has had some intermittent problems that we wanted to check out. She has had some pain in her heel, some pain in her back, the weird blood results, and some stiffness in her legs. Sam, Dr. Smith, and Greg had been in contact with Dr. K via e-mail and phone calls, but it is hard for her to get a real feel of what is going on without seeing Emma in person. So, on Friday, we booked tickets to North Carolina.

We left San Francisco at about 3:45pm on Monday afternoon. The flight ended up leaving about 35 minutes late, so we were concerned about making our connecting flight in Washington D.C. We made up time on the flight, so we ended up making it in time for our connecting flight & our luggage made it, too (a big relief!). However, when we got Emma’s Cruiser (wheelchair) from the airline, it had a flat tire in the back. So, it was interesting to see Greg & me pushing Emma on 3 wheels! After renting a car, we arrived at the hotel at about 1am (EST), which was 10pm our time – not too bad. However, Emma’s first appointment was at 8:30am (EST) on Tuesday. So, we woke up at 3:45am Pacific time! Neither Emma nor I were happy campers! Emma had a full day. She had her nerve conduction test first, followed by her EKG. We had a quick lunch, then headed to clinic at 1pm. We were in the waiting room of clinic until 8:30 pm, when Dr. K and Sue came to see Emma. During our wait, we had the chance to meet Cassidy (www.cassidyshope.com ) and her mom. It was their last day at Duke, so our timing was perfect. It was great to compare stories and to watch the two girls together. They watched each other curiously. It was really cute. We’ll post a photo or two when we’re home.

Dr. K was very happy that we made the trip and was happy to see Emma. Emma is doing much better than she had envisioned from the prior correspondence. Emma’s nerve conduction tests come back as stable, which is wonderful. She thought that Emma’s legs were a little stiffer, so she’ll be adjusting her baclofen dosage. She also found through the blood tests that Emma has a very low cortisol level, so she’ll be going back on Cortef. Dr. K said that many of Emma’s symptoms could be caused by the low cortisol level. Emma had lost weight since her last visit, which could also be related to the cortisol. With her extended steroid use during transplant, it is not unusual to see the low cortisol level.

Emma walked around and also showed Dr. K and Sue some of her cheerleading moves. It was SO cute! Emma was very enthusiastic showing them her “high V” and “low V”. (You’d be proud, coach Jodi!). They really got a kick of out it. They both thought that she was communicating better and was much more in tune with what was going on around her. Recently, she has been wittier, telling jokes, and is actively involved in conversations. We were very happy with the discussion with Dr. K. Emma had done great on our trip to MN, then had some other problems in the last couple weeks since she’d been back. Even this past Saturday, she was bright and alert in the morning, then was just “off” later in the day. Sunday, she had a great day at cheerleading practice. We got video of her 'jogging' around the gym! The ups and downs, too, Dr. K said, could be attributed to the low cortisol levels. There were still some test results that hadn’t come back before seeing Dr. K., but after seeing her, she didn’t expect anything else to be unusual.

Emma had her MRI this morning at 7am EST, so we were up at 3:15am PST! She had an MRI done on her brain, hips, and spine. Tomorrow, she meets with Dr. Escolar, who will review her neurodevelopmental progress.

So, we’re happy we made the last minute trip. We’ve had good news so far, will have the addition of one medication, and the tweaking of another.

Also - please check out the prior journal entry (I just posted). It talks about our wonderful family vacation to Minnesota in June!

June 2007

We had a busy June! Mallorie graduated from Middle School and had a promotion ceremony. She’ll be heading to High School next year. Emma finished Elementary School and will be heading to Middle School next year. Josie finished 3rd grade, and will be in 4th grade in Elementary school. So, we’ll have 1 child in each school next year. Fun! ;)

The day after school was out, we all flew to Minnesota. We had a wonderful family vacation! We went to my Uncle Tom & Aunt’s Susie lake house where Emma, Mallorie & Josie fished a ton. They caught so many fish, it was truly amazing! They caught sunfish, bass, and perch. Uncle Tom cleaned the fish & Aunt Susie fried the sunfish, so the girls were able to eat what they caught. We’ll also have to post a picture where all 3 girls caught fish at the same time! They had a ball. We went on a sunset cruise on the pontoon boat every evening. We were lucky to have wonderful weather most of the time. Tom & Susie were such wonderful hosts. We stayed at their home in the Twin Cities area, too. The girls already want to go back next year!

We also went to the Mall of America. I think Mallorie was the most excited about that! We went shopping, to the movie theater, and to the amusement park in the mall.

We were able to see my Grandfather (grandpa Pinkie, the Shriners clown), his longtime friend Mary Lou, my great Uncle Roger, Aunt Darcie, Uncle Ed, and cousins Tony, Sara, and Scott.

We had a great time & look forward to next year! Hopefully we’ll be able to make it back to Minnesota again.

Friday, June 8, 2007

Emma continues to stay busy with school and all of her therapies. Her last day of elementary school is Thursday, June 14. We want to take the opportunity to say thank you to all of Emma's teachers, therapy providers, and the administration at Walnut Acres. They have been wonderful to work with. Most of all, we'd like to thank Emma's aide, Debbie. Debbie is with Emma every day, all day, at school. She has been such a blessing. Lucky for us and for Emma, Debbie will be staying with Emma in Middle School.

Emma's IEP went well. She is set with all of her same therapies for Middle School. She will be attending the special day school starting in the fall. At minimum, Emma will have one teacher and two aides, in addition to Debbie. At maximum, there will be 8 students in the class. We are hopeful the smaller setting will provide more peer involvement for Emma. Emma had the chance to meet her new teacher, Mrs. Fox, after her IEP and also had the chance to visit her new classroom. Debbie said that it went really well. Emma was involved and seemed much happier than she does in her 5th grade classroom. The children are nice to her, but as they're working on 5th grade work and she's working on 1st grade work, they're just interacting at a different level.

I had the chance to take Emma to water therapy this week. It was interesting to see. The therapist works well with Emma and provides her with fun activities, while trying to build her strength and stamina.

Emma has had some recent struggles that we're trying to work with the doctors on. She has good days and bad days. She was having allergy problems, so she's been taking a small dosage of Zyrtec recently. Moreso when she's tired, it seems...she starts leaning a lot, then her back starts to hurt, which often causes her to lean more. She had some unusual lab tests recently, too, so we're hoping that everything normalizes. Emma had been taking Baclofen, but now the doctors want her to stop taking that to see how she does. Today, she was having difficulty walking. She is getting new orthotics, too. So, lots going on.

Emma continues to go to cheerleading. She got her skirt last week, which she was excited to wear for the rest of the day! As Mallorie is starting POM (a dance/cheer program) this summer, Emma is excited to be doing something similar.

Through my employer, Chevron, I've had the opportunity to be involved as an advisor for the On Track program. It is a program for Adults with Acquired Brain Injury in the Mt. Diablo School District. Though MLD is not a brain injury, it has been a wonderful program to be involved with. I've met some great people and tried to contribute to this worthwhile organization. In today's advisory board meeting, we discussed the high percentage of those injured in the war who will have acquired brain injury (60-95%). Just like with MLD, this is about awareness. If you know a soldier who has returned from the war who is having difficulties (some are hard to recognize), please have them look at: http://www.dvbic.org/ . There is a screening tool for TBI (traumatic brain injury) online. Please pass this along, as appropriate.

We'll try to update later in June, after we return from vacation with the girls!

Happy Summer!!!!

Erin

Monday, March 5, 2007

Greetings! Hopefully you'll be pleasantly surprised by both this journal entry & a couple new photos!

We just returned from my sister Lindsay's wedding in Monterey. We had a great time! It only took about 2 hours to get there, which was nice. That seems to be an acceptable driving limit, where the kids don't get too cranky (with a food stop about halfway through)! Emma and her sisters spent some time with their cousins (ages 13, 11, 7, 1, and 6 mos) & other relatives. It was a beautiful wedding held on the beach. Emma was dancing with Gramma Cindy, Great Grandma Potter, and her Great Aunt Susie at the reception. She also danced with the groom, Dave, twice during the money dance. She was having a lot of fun!

Emma's tests appeared to have gone fairly well in North Carolina. We haven't received the reports back yet, but hope to soon. Most of the tests were stable, with her nerve conduction test showing slight improvement. I'll post more when we get the results back.

The prior Friday, Feb. 23, Greg and I brought Emma, Mallorie, and Josie to "special skater" time at the Oakland Iceoplex. They have an hour each Friday afternoon where children can use walkers & wheelchairs. Emma met some girls from a local "girls club" whom we hope to see again. I was introduced to the girls club last year when I attended a conference in San Francisco with a mom who has a disabled daughter. I'm glad we were able to finally meet some of the girls. It was great to talk to some of the other moms. They have had their daughters experience some similar struggles that Emma faces in school. Though the other children are "nice" to her, she just doesn't have many "peers." We are hopeful that being in the special day class in Middle School will bring her more peers. Though it's a small class, we really think she'll be much more comfortable there, as she'll be able to interact more.

Speaking of which, we have Emma's IEP coming up at the end of March. At this time, the educators from both the elementary school and middle school will be involved in preparing for Emma's transition to middle school. She will likely also visit her new classroom in the spring to start introducing her to the kids, classroom, teachers, etc.

We've been looking for other activities, again so that Emma may have more peer interaction. I found a special needs cheerleading group that meets on Sundays (I visited the class recently. The coach is a former special needs teacher!). There is also a challenger division baseball group that has all levels of players. Even if she doesn't play, we thought maybe she could go watch & cheer on some of the players!

I happened to join a Bay Area special needs online group. Just a day after joining, another member posted some information about a foundation for whom she volunteers. The foundation is focused on brain repair and regeneration. We hadn't seen this foundation's information before, but the doctor mentioned is one who Dr. K has mentioned before, too: http://www.cnsfoundation.org . We are hopeful that someday this type of research will be able to help Emma!

We were recently contacted by a family whose daughter Cassidy was diagnosed with MLD. They were without much hope, until they found Emma's story at www.emmasfoundation.org. They talked to Dr. K immediately, went back to Duke & are now starting the transplant process. The transplant is obvsiously not without risk, but we were so pleased that Emma's story has provided information and some hope for another family. Please visit www.cassidyshope.com.

The nine year old daughter of a friend of mine at work was recently diagnosed with Leukemia. I have setup a caringbridge site for Kelsey here: www.caringbridge.org/visit/Kelsey. Her prognosis is good. She has started chemo & had her central line put in last week. Though it breaks my heart to see more children go through chemotherapy & transplants, I am glad that we are able to help where we can.

Last but not least...the 2 month old daughter of two childhood friends of mine from Lake Tahoe recently had meningitis & encephalitis. She is stable now, but they are unsure of any long term damage. Zephyr & her parents (Monique & Clayton) recently went back to Duke (to some different doctors) to check on a unique medical treatment being done there to keep the virus from coming back.

Please say a prayer for all of these children.

Thank you,
Erin

Thursday, January 18, 2007

I can't believe it has been a couple months since we last updated. Sorry for the delay! It has been a busy time around here. Emma is stable & doing o.k. We had all 3 girls for 3 out of 4 weeks from mid-Nov. through early Dec. We had a nice Thanksgiving where Greg did ALL of the cooking! Emma is always the first to want to toast her "kid-wine" (sparkling apple cider). The girls were also with us from Christmas day through January 2. So, it was busy at the McGregor household during the holiday season! Since Emma and her sisters went back to school on January 2, we've been back to our normal schedule - 5 days one week & 2 days the next. 'Normalcy' can be good, but it was also great to have the kids around more often!

I had the chance to attend a field trip with Emma and her class. We went to a museum in Berkeley with a "grossology" theme. It was fun to go around with Emma and also catch up with Debbie, Emma's wonderful aide. Greg has been "rainy day" dad for Emma's classroom on Thursday. As in many CA schools, there's not room inside for all of the kids to eat lunch (lockers are outside for older kids, too -- hard for a Minnesota girl to fathom!). So, on rainy days, a parent comes into the classroom to watch over the kids. It's been rainy on at least a few Thursdays which has given Greg the opportunity to sit with Emma & some classmates & play games. Emma is so excited when it rains on Thursday!

Emma had a nice Christmas. She received some movies, a game-boy type game, some clothes, and other activities. On New Year's Eve, we made homemade noisemakers & counted down to the New Year (at New York time, at least!)

Emma is continuing to work hard in her therapies. Due to her recent weight gain, she is having some difficulty adjusting (imagine gaining 20f your body weight in just a couple months!). She hasn't grown much, in inches, over the past couple years. We have a wall chart which shows growth of just over an inch in the last couple years.

We visited the special day class at the middle school for a second time. We think that Emma is really going to enjoy the class. They're going to allow her to take some field trips with the current class in the spring.

Emma is headed back to Duke for her annual checkup at the end of the month with her mom & stepdad. We'll be here with the other two girls. We expect most things to be stable, but her results may appear to be quite improved in some areas, as her arm was broken last year, affecting many of her test results. So, we'll see!

Thank you for continuing to check in on Emma. We appreciate the continued support.

Saturday, November 11, 2006

Please see two new photos from Halloween. As you'll see, Emma is definitely a good witch!

Emma continues to (positively) progress at a slow, yet steady pace. Seeing her nearly every day, we sometimes forget how far she has come. We're working with her to do more dressing & undressing by herself. It's a long process that takes some patience, but she has come a long way, just in the past year. She is able to unlace her shoes, push her shoes off, undo the velcro on her SMO "boots", push her "boots" off, and remove her clothing & put on new clothing or pajamas (with some assistance if there are snaps, buttons, etc.). To get undressed & get her pajamas on used to take about 20 minutes. Now she's down to about 7 or 8 minutes. She feels really proud of herself when she's able to do things on her own, so we definitely encourage her!

Emma's mother, Greg, and I were able to visit the special day class last week. This classroom is located at the local middle school, which she will likely be attending next year. The class has a maximum of 8 students, with a teacher and two aides. Additionally, Emma will continue to have her one-on-one aide. We are hopeful that Emma's current aide, Debbie, will be willing to move up to the Middle School with Emma. Debbie has been such a blessing to Emma. The continuity of having her last year and this year is great. It appears that the children in the special day class have a variety of disabilities. They all seemed eager to learn and happy to be there. During our visit, they were working on important skills for day-to-day life -- such as days of week, telling time, counting, etc. There is another visit coming up on Monday morning, so we're looking forward to that, too.

Emma has had some periodic leaning issues with some corresponding back pain. She saw a specialist at UCSF. A prescription has been ordered, but she hasn't been leaning too much recently. We will soon have the medication on hand, though, which can be used during those periodic times when she is leaning. Overall, her health is good. She continues to take a medication to encourage her eating, as she hasn't gained much weight over the last few years.

Also - Emma lost her first tooth in the last couple years. She was very excited!!

Emma continues to be a sweetheart. As I tell people, "She has more right than most to complain, yet she rarely ever does..."

If you haven't seen it already, please view the video from Emma's recent award -- link is on prior journal entry.

Erin

Monday, October 23, 2006

On Thursday, October 19, Emma was among 56 recipients of a special award. Emma is in a school district of over 35,000 students. Each school chose one representative from those students who received special education support who demonstrated outstanding success. Emma was the "Celebration of Success" student recognized by Walnut Acres Elementary School.

Greg, Emma's sisters, and I attended as well as Emma's Principal - Mrs. Lock, Emma's speech language pathologist - Mrs. Meuel, Emma's resource specialist - Mrs. Rounkle, Emma's school psychologist - Mrs. Wilson, Emma's occupational therapist - Bryan Cassin, and Emma's grandmother. It was great to have so many people there supporting Emma!

Everyone is very proud of Emma. She works really hard in all of her therapies at school & outside of school.

Below is what was said about Emma as she was introduced and received her award:
“From Walnut Acres, Emma McGregor. Described as cooperative, hardworking, and friendly, Emma maintains a bright and positive outlook. She is very outgoing. She never fails to say hello to all who know her and care for her. Emma never excludes anyone. She shares and cares for everyone she knows. Emma always cooperates and never complains, even when the tasks are difficult. She has a positive attitude and a great sense of humor. She is a joy to work with and an inspiration to all of us.”

Please visit the link to the video: Emma's Award Video

You can also see a copy of her award on the "view photos" page within her caringbridge site. Enjoy!

Erin

Monday, October 9, 2006

Emma has been going to school and adjusting to a busy new year. She is doing well in 5th grade with her aid. I should point out that she doesn't do any 5th grade work with the group and works on basic spelling words and writing her a,b,c's. She is disconnected from her class but at the same time she has friends and is generally happy.

One of the biggest things that is going on with her that when she gets tired (an assumption on my part) she begins to start to lean to one side or the other (sometimes to the front). Last week she was leaning to the right. When I felt her back, her left side was very tense and seemed inflamed or flexed when she was leaning. So far, massaging out the muscle combined with a day of rest and Advil seems to do the trick. Emma is going to see a specialist to see what we can do. Again, one of the big theories of using cord blood stem cells for the BMT was to protect the peripheral nerves. Please keep your fingers crossed. Good news can only help her and other children to follow.

Emma is headed off to 5th grade camp today. She won't stay the week but she will stay today and I'll take her up Thursday for the day again. She has been pretty excited all week about camp.

Greg

Monday, September 11, 2006

Emma has started 5th grade and entered her normal school year routine. She has a fully-modified curriculum & does schoolwork at about a 1st grade level. Emma has a nice class and a good teacher. However, she doesn't seem quite as happy as last year. It is early on, however. In 5th grade, the class seems to be doing more group activities and she seems a bit more disconnected that last year from the class. The kids are still absolutely wonderful to her. Between Debbie, her aide and the kids, we really couldn't ask for more.

Emma really hasn't improved much. This is good as she hasn't declined either. Emma has made very small gains so we'll have to see what the future will bring. I hope for better gains. Emma did have a great spelling test the other day. Erin spent a LOT of time with Emma on the class “mission statement” and 8 spelling words. (It's great we're able to partner with Debbie on goals for Emma.) The next day Emma got 7 of 8 correct on her spelling test. However, the problem is that if we were to ask her two days later, she may not remember them at all. I guess this is why it takes longer for her. "Normal" kids would need to learn something X times before committing to memory and with Emma it is more like X times X. We'll keep pushing.

Emma was invited to a friend's birthday party. She was able to go to part of it and you should see her face when she knows she'll be with friends (Granted, the friends “baby” her, but she still has a great time).

Emma is doing a bunch of leaning to one direction lately. Sam is going to take her in to see her pediatrician to make sure she is OK. I'm not really sure why she does this, but her oncologist on this coast thinks it might be neurological. We'll see.

Emma's aunt Nicki had a baby yesterday and Emma can't wait to go see him (Ethan) and the rest of his new family. We plan to take some time and see them later in the month.

Emma's services are going. Emma's progress is very slow but she is happy. We are now masters at insurance, or should I say Erin is. I can't believe the amount of work she has done to get everything simply seamless for Emma. It is great.

Greg

Tuesday, August 15, 2006

There has been a lot going on with Emma (all fine) but it seems that when I sit down to update something seems to come up.

Emma had her (almost) first sickness that did not require hospitalization. Dr. K said that she had a normal immune system and to watch her. What a wonderful thing to hear. After a few “normal” sick days, Emma was fine.

Emma's summer schedule has been erratic. We have been doing a lot of exercises and activities at home to keep working with her. She still tires so quickly that it is hard to work a long time with her.

I guess the most exciting thing this week is that Emma is at camp Okizu. She was so excited yesterday morning. She woke up and instantly was trying to get ready to head to camp. She really likes it there. She should have a lot of fun.

- Greg

Thursday, July 6, 2006

HAPPY 11-th BIRTHDAY EMMA!

Emma turned 11 on July 3rd! Woo Hoo!

Emma was with her mom and she says they had a great time on her birthday with a BBQ and playing in their backyard. She looks like she had fun. She sure was tired yesterday at the end of school.

It has been a busy few weeks. Emma finished 4th grade at her Elementary school and began summer school with another aid. We have really been blessed with wonderful people that support Emma so much. Even several of her classmates are just so wonderful and supportive of Emma. It is just awesome to see.

Emma now goes to Mallorie’s junior high for summer school (just down the street). She seems to be enjoying it. She takes the bus (OH HOW SCARY) by herself two times per week to OT/PT through a local government sponsored group called CCS. I can’t tell you how much my heart pounded putting her on that bus by herself. Oh dear. She seems to like it but says the ride is very long and boring. They have to travel a ways so I can understand that. I actually sent her with a book today so we’ll see how that goes. Summer school will continue through the end of July.

We are going to continue, in a little bit of a crazy schedule, Emma’s services throughout summer. She’ll start 5th grade in the fall.

Emma in general still has on and off days but it seems much more directly tied to how tired she is. I think that when she isn’t tired she does much better and continues to improve at a very slight rate.

Emma also switched medications to try to stimulate her appetite. I haven’t noticed much change yet.

Greg

Monday, June 12, 2006

Update on Emma


I can’t believe that it has been almost six weeks since our last posting on Emma. Things have really been busy around here closing out the end of the year, setting up for summer and planning for the fall.

In general, Emma seems stable and is doing more than she was a few months ago. I think that her confidence is up and her therapies are going well. I still think that her decline had to do with her arm being broken and the fact that she wasn’t as confident in anything she was doing. We’ll see on our next set of tests.

As for school, Emma will be attending 5th grade at her current elementary school next year. We spent a lot of time trying to figure out if going to SDC (special day classes) would be better. However, in the end we all agreed that having Emma in 5th grade with an aid would be better for her. I think it will be a smother transition into SDC in junior high the following year. Although Emma is happy she is lonely. We are looking into programs for her to find kids that she can better relate to.

Emma just had her birthday party with her classmates. She had a party at color me mine. She and her friends painted plates. It was a good choice for her and something that she and her friends could enjoy.

School is out at the end of this week. Emma is pretty tired most days. We’ll have a nice break next week. Her sisters are off with their mom to Tahoe. Emma will get to spend time with Erin and myself next week. We hope for a relaxing week and some fun things for Emma.

Greg

Monday, April 24, 2006

Update on Emma

It has been a month since our last post on Emma. We have had some time to watch her arm heal and to see how she has changed (We are still waiting for the full report from Dr. Kurtzberg).

One of Emma’s PT therapists was shown Dr. Escolar’s report on Emma’s current skill level. Now that Emma’s arm is better, her PT repeated most of the tests to try to see how her arm had affected her skills. Emma did better in all the categories since her trip to Duke. That is great. However, I should say that she does seem to have more gait issues than months ago.

Emma has had a full month leading up to spring break. She continues to do daily therapies and still cheers herself on. I wish I could say that she is slowly improving but it is hard to tell. What I can say is that she does seem stable and in the grand scheme of things sort of “frozen” in time. However, that is awesome compared to what we were faced with over two years ago.

We just got back from spring break. Emma, her sisters, Erin and I all went up further north in California. We went to the ocean, Fort Ross and went swimming. All the girls really had a great time and didn’t want to go home. When Erin and I asked Emma what her favorite part of the trip was, she responded with “Red Lobster”. There was a Red Lobster on the way up to our final destination. If you all don’t remember, Emma really loved the Red Lobster near Duke.

We are ending spring break and Emma will be headed back to school on Monday. We are continuing with consistent services for Emma and are helping push for new possibilities for Emma in the future. Emma’s IEP sessions are next week so we’ll report on those results in a week or two.

Foundation Work

The new and improved Foundation was finally launched. The foundation has been focused on doing research around the world on what the next steps are to help push forward. The foundation spent some time with groups in Italy, Mexico, local and other places. Dr. Kurtzberg's work at Duke appears promising. Please Signup at the foundation as there are fundraisers starting now to help Emma and other children.

Greg & Erin

Sunday, March 19, 2006

Emma’s Foundation launched a new version of the website (www.emmasfoundation.org). The foundation has also been working on a new technology called MLDWire. MLDWire continually searches and locates MLD relevant articles and information. The hope is to share more information about MLD and make it more accessible. Please visit www.emmasfoundation.org.

I also encourage you to signup at Emma’s Foundation. As MLDWire evolves, you will have the option to receive alerts for new MLD information.

www.emmasfoundation.org

Update on Emma

When we arrived at Duke, Emma had a broken right arm (near the joint in her shoulder). I was concerned with traveling to Duke, specifically for Dr. Escolar’s tests. Dr. Escolar’s tests include tests for both cognitive and motor skills. When Emma broke her arm, it seemed that she had lost skills, but I attributed that to her broken arm (and might still – I just don’t know now).

We just received the report from UNC (Dr. Escolar’s report). It might just be better to simply state what is in the report: “Emma demonstrated a decline in motor skills. She had a mild decline in ball skills; however, this could be attributed to the limited use of her right (dominant) arm. A significant decline was noted in stationary skills. Although Emma’s right arm injury mildly impacted her balance, it is unlikely that the significant drop in her skills can be solely accounted for my limitations of her right arm.”

Although the above statement is pretty clear, it was my fear after Emma breaking her arm and seeing her “move” around, that this might affect her outcome. I was clear to state that to Dr. Escolar so that was taken into account.

When we left Duke, Dr. Kurtzberg felt that Emma would show gains over the next two years (we are awaiting Dr. K’s summary to hear more).

Greg & Erin

Sunday, March 5, 2006

Well, we are back from Duke! We got back and it has been a busy week (hence the long time to posting)

I guess to summarize this trip for Emma would be to say that it was just full of wonderful news. Emma is stable and continues to be stable. After that, more wonderful news was that Dr. K and staff feel that Emma should (please pray) return to where she was pre-transplant. To make matters more wonderful, there are some other MLD families that we should join forces with to fund research at Duke – why? - because we are talking about trials of stem repair on Emma in just 2-3 years.

More to come as we gather ourselves…

Wednesday, February 22, 2006

We are done with Day 3 of the tests here at Duke. This morning was the BAER/VEP and other tests. I have called this the sleep test in the past because they tell you to keep the child up from midnight on and then they usually sleep for 5 hours or so during the tests. Well, Emma and I went to bed at about 1am and got up at 6am to do the tests. Because Emma was tired and very relaxed watching TV in the dim light, she never had to sleep for the tests that lasted hours. I didn’t even realize that was an option. I guess you learn something new everyday.

We had the same technician, Carolyn, as pre-transplant and a few times since then. It is nice to see them and it is really nice for the technicians to actually see the progress of the kids as they go along. That is rare for them.

After our 5 or so ours of tests, we headed up to the 5200 to see if Nurse Jennifer and others were up there. We made it up there and did see Jennifer and some of the other staff. Emma was so excited to see them. That really made her day.

Some of the staff introduced Emma to a few other parents. I know that means a lot to the other parents because it is so nice to see a healthy child on the other side of the horrific process.

It was easier being on the 5200 this time than any other time in the past. I guess things get easier over time. The past trips have been hard for me to go there.

Erin gave Emma a journal book so Emma is (attempting) to write in the journal each day. I’m actually writing for her. She also has been wearing her flashing bracelet she got from Erin and getting compliments. (It is cute). Erin is at home with Emma’s sisters right now so that Emma and I can be here. I am grateful for that and all the support she has given us.

It is about 2pm here and I think it is break time and then I’m taking Emma out to the movies. We’ll see how things go – both Emma and I are so tired from staying up last night and not getting sleep.

Doing the usual at Duke – tests,

Greg & Emma

Tuesday, February 21, 2006

We are at Duke for Emma’s 2 year post transplant check up. I have had some computer issues so I wasn’t able to update sooner. February 19th was Emma’s 2 year transplant birthday!!! Emma was pretty excited about coming out to see Dr. K.

On Monday, we got up about 9am to start the day and work into transitioning to East coast time. We had breakfast downstairs at 10am and headed to the Duke CHC. We did our initial check in that consists of weighing her in and getting her height. Emma weighed 52 lbs and had grown 2cm (it’s a start). Anyway, our first day consisted of a chest X-ray and an echo cardiogram. We had lunch at the infamous Hardies (the only place other than the cafeteria in the hospital to eat). Emma also did the pulmonary test and she was still having a hard time getting a good reading.

We are staying that the Hilton this trip. We stayed here two years ago getting ready for the transplant and I stayed here the months during the transplant. There were several employees of the Hilton that remembered Emma and me. They were very happy to see us as they had been wondering for some time what the final outcome was. That was nice for all of us.

We concluded Day 1 with Chinese food at Neo China, Emma’s favorite.

On Tuesday (today), we got up early to get to Dr. Escolar’s by 8am. It has been a long day. Emma is tired and the tests at Dr. Escolar’s are non-stop for about 5 and ½ hours. After we finished we had pizza at one of Emma’s favorite pizza places in Durham and saw Dr. Green. Emma’s eyes are completely stable and actually look as if the cataracts are not as bad. Dr. Green said they looked better in the picture but that would be a first for someone to reverse that. He just shrugged.

Tomorrow we have to be at the SLEEP STUDY at 8:30am. YES – we wake up and then have to have her sleep, get serious. I’m going to keep her up late!

Emma is actually playing golf on a video machine at the Hilton right now where she played two years ago. I have a picture of the two of us. I’ll have to take another one this trip and post them both when I am home.

:)

Greg & Emma

Thursday, February 16, 2006

I took Emma to an Orthopedic Surgeon today to have her arm looked at in more detail. Her pediatrician was concerned the break might be worse that expected and potentially would need surgery. The good news is that Emma’s arm is already healing and she was moved to a simple sling. The doctor wants to check her in two weeks but thinks she might not need the sling as early as four weeks from now.

That is a relief!

Friday, February 3, 2006 - Emma Goes To Hawaii ‘slinging’

Emma Goes To Hawaii ‘slinging’

I guess I should start with some updates on Emma’s progress. I think, not sure, that I have seen small sparks in Emma the past few weeks. She seems to be better physically coordinated and using the restroom more often. She continues to work hard at every session she participates in. She pushes herself and cheers herself on. The other day in PT Emma had to walk on a tread mill (with a lot of support from her PT) at a rate of 2.5 for 3 minutes. Within the first minute she was chanting, "Go legs go – go legs go – you can do it Emma." Where did this kid come from? She is such an inspiration and such a grounding child. She is just so wonderful.

Emma left for her Make a Wish trip today with her mom and step dad (with brothers and sisters) to Hawaii. They have some special things setup for Emma when she arrives. You would think that after two years of being restricted that all she would have to do would be to get on the plane and get to her “wish”.

Well, Emma fell down the stairs at her mom’s house getting ready for the trip. Emma fractured her shoulder last night. Erin and I joined Sam and Emma at the hospital. Emma's grandmother also came by. As we all sat at the hospital late last night, we couldn’t help thinking - what the heck. Eventually they put an immobilizing sling on Emma. After a while, Emma looked at me and said, "What is this?" I think Emma was under the impression it was just to try on or something. When I told her she had to wear it for six weeks, she cried. The poor girl is within hours of her Make a Wish and then this. Anyway, I talked to her about it and said it was temporary for six weeks. We talked briefly about ‘getting through’ things (we have had a LOT of practice the past two years). Surprisingly she stopped crying as she realized that it was something that would pass (my dad always used to tell me – this too shall pass; he was right). Some of the nurses came in that know Emma’s history to tell her how sorry they were. In only a way Emma can do it, she said to them “it’s ok. Don’t worry. It won’t be forever”. What a girl. The only downer is that her physical progress will suffer a she won’t be able to do much PT/OT/water therapy etc.

Well, Emma and her sisters are off to Hawaii and on a plane now. I am very happy for them. I told Emma to have as many chocolate shakes as she wanted and to live up what she could. I can’t wait to hear how the trip went.

Greg & Erin

Wednesday, January 11, 2006

It has been a full month since our last posting due to the holidays. We took a break from “stuff” but it is time with the start of the New Year to get back on pushing forward.

Emma had a good month and a great holiday. She enjoyed the time here and at her mom’s house. The only down side was that Emma contracted some virus and has been on antibiotics for the past few weeks. This “virus” just didn’t seem to go away so Dr. Whyte decided to put her on antibiotics. She is doing better now. Emma also had a fall and twisted her ankle. That wasn’t great. Just before Emma was due to come here, she had fallen and was fairly teary. She was crying for Erin when she got here and as luck would have it, Erin was home from work that day. So, they got to spend some time together. That seemed to make Emma pretty happy.

Overall, I just haven’t seen a lot of progress in Emma. It is frustrating but I guess this is what was expected at best. At times I’ll look at her and think I see walking improvements but then I think I’m just wishful thinking. I can’t say I have seen much improvement at all in academics. In fact, the majority of her IEP came back as showing no improvement. I guess there is just a lot of work to do going forward with helping MLD all around.

We all had a great holiday and are starting off with a positive look at 2006. We have had a lot of challenges over the past few years and I think that 2006 can be the year to start moving forward, building and having fun. As I am in the computer field, I am going to put together some work for some developers to begin work on Emma’s foundation and to assist overall with communicating about MLD. I hope that in 2006 we can make some difference and I hope to jointly work with other families.

- The McGregors

Wednesday, December 14, 2005

We have all had a very full month this past month. Emma went with her sisters back East to her step dad’s relatives for Thanksgiving. Erin and I went on a late honeymoon/anniversary over Thanksgiving (we have been kind of busy the past few years). The girls seemed to have a good time back there and we talked to them on and off.

Emma continues to be stable. There are some days that I swear I see a little improvement but I’m just not sure. I think that seeing Emma nearly every day doesn’t help a lot either. We are busy working on Emma’s services for the start of the year. That involves working with the district and local service providers to make sure she has enough PT, OT, Speech and other therapy sessions per week.

I have had some work changes so I am hoping that the time I have freed up will allow me to be more involved with MLD education, therapies, treatments, cures and so forth. I plan to increase what I do to help MLD in 2006. Of course, that will start with a revamp of www.emmasfoundation.org and new software development efforts centered on education and research.

We are saddened at so many families that have suffered losses to MLD. It has been so hard and with more recent losses it has been extremely difficult for me to post much of anything.

My heart goes out to you all.

Greg

Monday, November 7, 2005 - The Little Things

The Little Things


Emma continues to be stable and I think that she has improved a bit on her agility. I’m not sure but it may be the case. I was gone on potential future business this past week and didn’t see her so that might be affecting my judgment. We’ll see. One thing is for sure she is one happy kid!!!

As I look back over the past two years and through all of the hard times that we have had, I realize now more than ever that it is every day and what you do that day THIS day that matters. When Emma and I were back at Duke in her hospital room, I realize what a sacred and special time that was. Every day was a lifetime and it was made up of a smile here or a hug there. Nothing else mattered. Despite the horror that was present, it was a time that Emma and I spent each day together just being present. Sounds strange I know.

I realize that no matter what is going on in my life, it is the ability to stop and say/hear “I love you”. This has been so profound to me that even at work during a presentation I might be giving if my phone rings and I see it is my kids or wife, I stop and answer it while everyone has to wait. I’ve been known to just carry on for a minute or two and then get back to my presentation. In the end, they are number 1. My wife thinks this is a little strange – ah, maybe.

I have decided to post as a result of simply dropping Emma off at School this morning. She had me in tears. Everyday when I drop her off to her aid, I say, “Have a great day princess”. This morning after I said this same thing to Emma she replied with “have a great day King”. Goodness - Could this day get any better?

I think that one great lesson for me over the past two years is that I can’t change the past but shame on me if I don’t make the most of the present; tomorrow it is gone and there is nothing you can do to change it. I’m so simple now; it just takes a few words or something to acknowledge a loved one for today.

A prime example: I just went to post this and I got a simple, “I love you” email from Erin. Today just got better!

I’m a lucky man!

:)

Greg

Saturday, October 22, 2005

Carolyn Wyman – We’re so glad that you’re out of the hospital & here asking for an update. You’re a continued blessing to our family & to so many others. We will continue to keep you in our prayers, as you keep us in yours!

So…Gramma Cindy & Grandpa Mike visited two weekends ago & again this weekend! It is Great Grandma Watty’s 80th birthday on the October 29, so we were happy to be able to spend some time with Gramma & Grandpa again this weekend. We went to dinner at a local Italian restaurant last night. Emma ate a bunch, including part of Gramma’s pizza & also some spaghetti with meatballs. When we find something she likes, she really eats a lot!

We had a great time during their first visit, too. They were both able to see how much Emma had progressed. We talked about how Emma is doing in school and how friendly the kids are to Emma. Gramma Cindy was a former special ed & elementary ed teacher & is now a high school counselor. Grandpa Mike was a former teacher, former elementary school principal, and now an assistant superintendent. It is great to be able to talk to them about Emma’s situation in school and to hear their suggestions about how to best help her.

The girls kept Gramma & Grandpa busy. The girls had them playing Uno Attack, Battleship, Mastermind, cards, and more.

Emma is definitely expressing herself more these days. She is more in tune with conversations and answers questions more quickly. I have said to her in past months, “Sounds like a plan, Stan.” She would respond, “My name is not Stan.” Now I say, “Sounds like a plan…” and she’ll say, “Stan.” A silly example, but she is really becoming more alert & involved in conversations!

Attached is a photo from a Rotary event we all attended earlier in the month. Everyone had a great time. Gramma Cindy & Emma were even dancing! Emma is so cute – she doesn’t move her upper body too much – she just wiggles her rear!

I’m also attaching a photo of the 7 McGregor grandkids – taken in late September.

Enjoy!

Erin

Friday, October 7, 2005

Where does time go? Sometimes I feel like I blink & weeks have passed by. I guess that can be a good thing…things are going well. We had a busy time with the girls with us for a week & a half and have since been back on the regular 50/50 shared schedule. Even that seems to keep us pretty busy!

Emma is doing well and continues to enjoy school. The other kids are great with her. She is like a celebrity at the school. However, school has its challenges. Many days, she is just wiped out by the end of the school day. She has been working on some 3-4 letter spelling words (e.g. went, were). This week she is working on phonetic sounds. As mentioned in an earlier post, she doesn’t have much homework, as the days are already so draining.

Emma continues her therapies inside & outside of school. We recently received copies of Emma’s reports from her last trip to North Carolina (as the reports from both Duke & UNC were sent to our old address initially). It is good to read about Emma’s progress. We were discussing Emma’s academic progress last night. It seems like there are peaks of progress, then some leveling. Greg said that Dr. K mentioned that they often see increased progress around the two year mark. We are hopeful for that. We also realize how fortunate we are and how fortunate Emma is to be doing as well as she is now.

The girls were able to spend some time with their new cousin last week as Jesse (& Carolyn & Todd) were visiting from Grand Cayman. All 7 of the McGregor grandchildren were together. The girls were great with baby Jesse & baby Abby.

Gramma Cindy & Grandpa Mike (my parents) are coming in from Nevada to see us this weekend. They haven’t seen the girls since our wedding last November, so they & the girls are really excited.

We continue to keep Maddie Trimper in our thoughts & prayers. There continue to be challenges that she, her family, and the doctors are trying to overcome. We wish them the very best.

Have a great weekend!

Erin

Friday, September 23, 2005 1:14 PM CDT

Emma had a bit of a cold earlier this week and visited her doctor, but she seems to be doing better now. School has been tiring for Emma, but she continues to do well. Today, her aide Debbie was actually home ill, so Emma is working with a woman named Barbara today. Any last minute changes are a little unnerving for all of us, but we are hopeful that today goes smoothly.

We have been busy at night with homework. Emma doesn’t have too much, as the days can already be pretty long for her just attending school. So, we’re all getting into a routine at night which includes doing homework, putting on Emma’s orthotic boots for an hour, having dinner, doing baths, etc. So, fairly “normal,” just busy. As Sam delivered her baby this week, the girls are with us from Wednesday of this week through Friday morning of next week. We're sure there won't be many dull moments over this next week!

Please say some extra prayers for Maddie Trimper. She really needs them right now. After finally getting Maddie back to Michigan, they are now trying to find a jet to get her back to Duke this afternoon. www.caringbridge.org/MI/TrimperMLD

Saturday, September 10, 2005 10:56 AM PDT

What a big week for Emma!! She, Mallorie & Josie started school on Wednesday. They just go for half a day on Wednesdays, so that was a nice start for Emma. She was able to make it full days on Thursday & Friday. She was looking pretty tired by Friday afternoon, though!

Emma has a full time aide with her all day long at school. Her name is Debbie. She is very nice. Emma has known Debbie for a couple years now. Additionally, Debbie was Emma’s aide during summer school, too, so the continuity is great for Emma.

When I picked Emma and Josie up from school yesterday, Debbie pointed out a friend that Emma met at school. I believe her name is Kelsey. She had taken a liking to Emma & had even brought her a little stuffed animal on Friday. How wonderful!!

The school is still working on developing a curriculum for Emma, as she is unable to keep up with the regular 4th grade curriculum.

There was an ice cream social at the school last night from 6-8 pm. In the prior week, the temperatures were still near 100 degrees here. Yesterday, the temperature was in the 60’s’s – not quite what they had expected for the first week of school (especially for an outdoor ice cream social!). Though exhausted from attending school this week, Emma was determined to attend the ice cream social. We layered her up with 5 layers (undershirt, shirt, sweater, vest & jacket!) and gloves. She seemed to stay much warmer than the rest of us! We saw some familiar faces, including former teachers, the principal, neighbors, and other classmates.

There are a couple photos from the Ice Cream Social on the Photo page.

So, week one went well for Emma. Next week will be interesting, as it is a full week! Hopefully everything goes as well next week!


Short interview with Emma today:

“Emma – what did you like best about school this week?” – Response: “Seeing Debbie.”

“What do you want to tell people on your website?” – Response: “That I’m alive.”

“Tell me about the kids in your classroom.” -- Response: “They are fun.”

“Tell me about your teacher.” – Response: “She was nice. She helped me.”

“What did you like about being back at school?” – Response: “I made new friends.”


We hope everyone is doing well.


Erin

Tuesday, September 6, 2005

New Photos of Emma from the Rotary Meeting (from Dirk).

Wednesday, August 31

Where has time gone?? Sorry for the delay in posting... I guess that means that Emma is doing great, right?? Well, she is.

First, we would like to send our condolences to Maddy Bates' family. Maddy passed away this morning. Emma had last seen Maddy on her last trip to Duke. We know this will be an extremely difficult time for Maddy's family. We wish them increased peace and comfort in the upcoming weeks. Please pass along your thoughts, too: www.caringbridge.org/ca/queenmaddy/

We would also like to send our prayers to all of the families affected by Hurricane Katrina. The devastation we have seen on television is amazing.


Emma had the chance to visit my "old" Rotary club, the Concord Diablo Rotary club, today (www.cdrotary.org) for lunch. Greg had the opportunity to thank the club for all of their support over the last couple years. Everyone was really happy to see Emma!! Greg said that she raised her hand & volunteered for all of the available positions at their upcoming fundraiser! Funny!! See the NEW PHOTOS!

We only have Emma this week as Sam took Mallorie & Josie to Tahoe. We had wanted to take all 3 girls to the Reno area over Labor Day weekend, as Emma can now travel out of the area as long as we have a prearranged pediatrician. However the timing didn't work out, as we had to have them back by Monday morning, so we'll have to take them to see my family another time. Emma is excited to spend some time with just Greg & me this week.

Emma has started aquatherapy recently. The water is nice & warm for her & she seems to enjoy it. She has a "shorty" wetsuit that she wears during her therapy. We're going to have to get her a long one if she heads into our pool, as it has cooled down again.

Believe it or not, the girls don't start school here until September 7th! They don't finish school until June 16, though, either. I had the opportunity to volunteer at the elementary school last night, helping out with school pictures. It was great to see some familiar faces. The girls are registered & ready to go. We are excited for Emma to head back to school, as is she. We're trying to get her prepared as much as possible.

Emma continues to do more & more on her own. She is able to dress herself (with a little help taking off a shirt or pajamas) & likes to assert more of her independence. It is Greg that is requiring as much effort as Emma (reminding him not to do everything for her!). =)

Thank you for your continued good thoughts. Please pass them along to others who are in need, too.

Erin

Sunday, August 14, 2005 4:57 PM PDT

We had an unusual week this week! Mallorie returned from a week long camp in the Strawberry area last night & Emma was at camp until today, so we just had Josie for most of the week, since Wednesday.

We picked up Emma in Fairfield this afternoon, which is about 25 miles from here. She was so excited to see us as she got off the bus, she was crying (actually wailing would be a better description). My eyes started tearing up, too, as did Greg's, I'm sure! She said she had a great time at camp. She looks like it - she seems exhausted, which we expected. She said that she didn't do the zip line (which she did earlier in the year). She said she was too scared. I don't blame her. =)

When asking Emma about the camp & what she wanted to say about it, she said, "It's cool. It's fun." That about sums it up.

Believe it or not we actually have a couple updated pictures from the pickup today! Enjoy!

Also - the girls' new cousin arrived this week! Aunt Sally delivered baby Abby on Thursday. Congrats Christer, Sally & Jake (aka Bubba)!!

Wednesday, August 10, 2005

It has been a week or so since I last updated. As I said before, Emma is doing well and all of her tests went well with great results. Since being home, Emma finished up her last week of summer school in the special day classes. I think her favorite part was her aid, Debbie. We spent the past few weeks slowly increasing Emma’s school time until we ended up with 9 to noon (most days). Emma was sure tired and mostly out of it the rest of the days after school. We might have to ease her into regular school (with her aid) next month. I doubt she’ll make the whole day up front.

Emma left for Camp Okizu on a bus! She had an aid/volunteer on the bus and she has an adult/aid with her while at camp. I must say it has been extremely nerving to see her go somewhere on her own. The camp called Sam later that first night to let us all know Emma was doing well, having fun and sitting my a camp fire. So nerving but I am glad she is having fun.

As I find out more on how she is doing, I’ll update.

It was Gramma Cindy's birthday on August 1. Happy birthday Gramma Cindy! Emma's cousin Jesse is doing great. At 4 months old, he is already at the 50th percentile in comparison to other 4 month olds. Amazing! Another cousin is on the way. Emma's aunt Sally is likely going to deliver in the next 24 hours!

- The McGregors

Friday, July 29, 2005

We got in very late last night but we did and are resuming our normal day to day activities. I think a highlight of the trip to Duke was the meeting with Dr. Kurtzberg and Nurse Practitioner Sue. Emma had finished up her MRI and Nerve conduction studies the day before and we were awaiting the results.

I was shocked to hear that Emma’s MRI was AGAIN slightly improved from six months ago and her nerves in her legs and arms were very slightly improved. For some reason I thought that since Emma was young and growing that her brain and body would do some repair. That isn’t the case. These improvements are directly related to the cord blood stem cell transplant. What is wonderful is that Emma is showing improvements that aren’t usually seen for a few more years out. I am just so thrilled. I am also thrilled that her peripheral nerves are stable (if not slightly improved). The transplant helps repair kids with other diseases but that has not been the case with MLD. The best we can hope for is stopping the disease when it comes to peripheral nerves. That is happening for now.

Over the past few weeks, Emma has shown signs of mental improvement and it is nice to see that it things are working.

We also spoke with Dr. K about all the money in California regarding stem cell research. Apparently, the money has a direct tie to research related to embryonic stem cells. I wish this were expanded because 1) In California, you can’t ‘donate’ cord blood yet (except in one trial in LA) and 2) Other cells within the cord have shown properties similar to embryonic stem cells. I was shocked to hear that you can’t simply donate after a child is born. (It is thrown away) Because of Duke’s program, if you needed a BMT Duke you have a 98% chance of having a match ON SITE. Dr. K is working on a program to have kits available to be able to remotely donate. (Hopefully I got my facts right)

When we chose Duke, there was speculation that cord blood stem cells would help Emma far more than a regular BMT from marrow. This is proving to be true in Emma’s case. (If you could get a BMT for MLD, you would probably lose your peripheral nerves. Not good). The good news is that the first set of published studies are due out over the next few months from Duke to help back this up.

Greg

Wednesday, July 27, 2005 8:31 PM PDT

Below is Greg's report from today:

8am to 12:30pm Emma did the BAER, VEP and EEG. They gave her 10mg of valium which put her to sleep for the test. That worked out great.

Had lunch and 12:30pm and ran into Joe Bates (Maddy's dad) for just a minute.

Emma was "out of it" according to her. She was sluggish, slobbering (while eating a lollipop) and being silly on all that Valium.

At 1pm Emma had between 12 and 15 vials of blood taken. They had to use both arms as her veins were being difficult. Yuck.

At 2:30pm Emma had her MRI. She did the best ever - 35 minutes (versus hours). Some of the valium was still in her.

Emma got to see Maddy Bates at about 5pm (by luck). We ran into her parents on the 5th floor. Emma, Sam and Rochelle went in to see Maddy. I guess Emma rubbed Maddy's arm and told her to be strong. Maddy liked that.

Maddie Trimper checked out at 1pm as they were heading back to the apartment.

Emma asked for Chinese and we did that again.

Tomorrow is the pulmonary and the EKG, then Dr. K and then home.

Greg

--------------
Mallorie & Josie are with me today & tomorrow. They have been attending creative arts camp from 9-3 every day, which they seem to enjoy. They have a performance coming up this Friday night. We went to an Italian restaurant tonight, Josie swam a bit, and Mallorie practiced her lines for Friday night's performance. Busy all around!

Greg said that there weren't any results given today, just testing. He expects to hear some results (hopefully at least the MRI) from Dr. K tomorrow.

Erin

Tuesday, July 26, 2005 5:25 PM PDT

Emma had a busy day today. She went to see Dr. Escolar at UNC early this morning, at 5:30 am Pacific Time. Dr. Escolar said that Emma’s motor skills have improved greatly, while her cognitive abilities have slightly improved. YEAH!!

This is exactly what we have been seeing, so we’re glad the testing showed the same thing. Initially we saw improvements in the physical area, while recently, we have seen more improvement in the mental/academic area. I noticed that things were starting to ‘click’ when Emma brought home 3 words to study for school nearly 2 weeks ago. They were 3 four letter words including deer and food (can’t remember the third). That was the first time in quite a while that she really seemed more on track academically. Greg noticed her improvement last night when he asked her some subtraction problems. She answered many problems correctly. He was pleasantly surprised! Maybe being back in the classroom setting is helping, maybe time is helping. Whatever it is, we’ll take it!

Dr. Escolar had many positive things to say about Emma’s improvements, which we hope to see continuing. It is just great to see the progress that she is making.

After Emma has her psychoeducational testing done by the school in the fall, Greg will be in contact with Dr. Escolar, who will decide if it would be best to see Emma back at UNC again in February.

During her testing today, Greg said that they showed a picture of a clown. Emma said, “That’s Pinkie the Clown!” She’s so cute! It is pretty cool having a Shriner clown for a Great Grandpa!

The appointment with Dr. Escolar took longer than expected, so Emma missed her appointment to have her vision checked with Dr. Greene. Dr. K will decide whether to have Emma see someone in California or wait until her next checkup in North Carolina.

They had gone to see Dr. K, but after waiting for a while, Sue let them know that Dr. K was quite busy and wouldn’t be able to see Emma today. I believe she is scheduled to see Emma on Thursday before everyone returns home.

Emma had Red Lobster tonight, which she loves. Before Emma first checked into Duke in early 2004, the 5 of us went to Red Lobster. The kids had a great time holding the lobsters. I think it continues to be a special place for Emma to go.

More testing scheduled tomorrow. Let’s hope this positive streak continues!!

Erin

Monday, July 25, 2005 10:14 PM PDT

Greg, Emma, and Sam arrived safely in Durham last night. I spoke to Emma last night & again tonight before she went to bed. She sounds good. She started this week’s testing by having her nerve conduction test today. Greg said that the results from the test today were quite similar to her tests six months ago. This is good news since it seems that her nerves have stabilized. There were some that tested just slightly better than last time & some that tested just slightly worse, but considering the margin of error allowed, the results were overall quite similar to the last tests. Greg did say that she was more aware of what was going on this time. She has become more vocal recently, stating more of what she likes and doesn’t like.

Greg said they saw Jeff & Maddie Trimper, as well as Grandpa Strawberry. It sounds like Maddie was pretty excited to see Emma as was Emma to see Maddie, I am sure. Greg said that going back on the 5200 stirs up a lot of emotions. They saw Dr. K very briefly, as it sounded like she was quite busy. Greg took some photos today including one of Emma with Grandpa Strawberry to give to Grandma Cindy, as Grandma Cindy & Grandpa Mike met and enjoyed dinner with Grandpa & Grandma Strawberry in Lake Tahoe last year.

We are hopeful that the tests continue to go well for Emma this week. She has an early start tomorrow, starting testing in Chapel Hill at 8:30 am (our 5:30).

Erin

Sunday, July 24, 2005 1:10 PM CDT

Sorry for the big delay in posting. Sam requested the girls for a week’s vacation during the week following July 4th, so Greg & I took the opportunity to get away for a week. We had a nice time; it was very relaxing.

Emma continues to do better & better. She has been going to special day school for the last two weeks. She gets some classroom instruction in addition to some of her therapies at the school. Yesterday, she was at school from 9am-1pm. This isn’t at her “old” elementary school, but rather another elementary school close by. The plan for her in the fall is still to return to Walnut Acres Elementary School (her “old” school).

Emma is encouraged to do more on her own to help build her strength and capabilities, which in turn, increases her confidence. I had bought her a bear with a number of different outfits for Christmas. Last weekend, she put some different outfits on the bear, which took her some time & effort. However, she had such a sense of excitement when doing this. I also had her put her own socks on one day. It took her about 10 minutes, but she did it!

Another exciting thing for Emma was swimming with Greg, Mallorie & Josie last weekend in our pool. Emma was having so much fun. She can’t hold herself up in the water, so Greg was very close by the entire time. She sat on a water “noodle” which helped to provide some buoyancy. She then paddled from one end to the other giggling, laughing, and screaming in excitement. Greg also worked with her on blowing bubbles in the water & trying to hold her breath for short periods.


Greg’s birthday was on Thursday. Happy 37th Greg! We went to a Sushi/Japanese restaurant where Emma ate a few breaded JUMBO shrimp (ones that were about 5-6 inches each). It’s funny. When she has food she likes, she eats just a ton! So, we’ll have to add shrimp to her list of mashed potatoes, spaghetti, etc. She is still a mere 49 pounds. Quite petite!

Greg, Emma, and Sam are on their way back to Duke for Emma’s 1 ½ year checkup next week today. We are looking forward to hearing what the doctors have to say about Emma’s progress & what else we should expect from here.

Though no one really knows what the future holds, every day we feel so blessed that Emma has done so well throughout the last year and half. We continue to remember those who haven’t been so fortunate. This last week seems to have been especially rough on the 5200. One little boy lost his fight in the past few days; a little girl is being taken off life support today. The Trimpers are back in the hospital as Maddie has had some complications http://www2.caringbridge.org/mi/trimpermld/ and another little girl that Emma knows, Maddy, has been in the PICU recently, http://www2.caringbridge.org/ca/queenmaddy/ . Please pray for these children, angels, and families affected by this awful thing known as MLD…

Monday, July 4, 2005

It sure has been busy at the McGregor household these past few days.

1st & most exciting – Emma turned 10 years old yesterday!! As she was getting out of the hospital after her gall bladder removal & recovery last year, on her 9th birthday, it was nice to have her out of the hospital & with us all day this year!

Emma’s aunt Nicki, uncle Lance, and cousins Kyle (11) and Christian (9) stayed with us from Wednesday through Sunday this week. All of the kids had such a great time together. We were happy that they were able to stay for Emma’s birthday celebration before making their 4 hour drive back home to Nevada. Emma’s uncle Chris and his girlfriend Erin came over for Emma’s birthday. Our friends Kristin & Bob came over, too. We stayed here at the house, barbequed, had cake & ice cream, and opened gifts. Emma received some very nice gifts from everyone here & we appreciated them all coming over.

On Saturday, Nicki, Lance, Greg, and the 5 kids went to Six Flags Marine World as I prepared for Emma’s birthday. Surprisingly it wasn’t packed! They all seemed to enjoy the day & were wiped out by the time I met them for dinner! Emma seemed to really perk up while going through the butterfly exhibit, which is very hot & humid. Apparently Miami may be a good climate for her post-transplant! ;)

Shockingly, we have not yet had Chinese food since Wednesday, when the girls arrived for their 6 day visit this week. However, I think we’re getting some today for Emma. Not quite the “All-American” meal, but Emma REALLY likes it! Also - today is Emma’s Great Grandpa “Pinkie’s” 84th birthday. (Pinkie is a Shriner’s clown.) Happy Birthday Pinkie!


Celebrating another one of Emma’s birthdays is such a milestone. She has been through so much in the last year and half. She has shown us unbelievable strength, courage, and determination. She does so without a complaint. Emma is an amazing person who continues to astound me!

We thank all of our faithful friends, family, and Caring Bridge followers for your continued support. Your support really means a lot to all of us. It is definitely a time of celebration!!

Happy Birthday Emma & Happy 4th of July.

3pm update -- without any prompting or recent discussion, Emma just remembered on her own that it is Grandpa Pinkie's birthday! Her memory is amazing in certain areas!! We just called him to say Happy Birthday!

Friday, July 1, 2005

Heads up -- Emma's birthday is Sunday, July 3 -- woo hoo!


Monday, June 27, 2005 8:45 PM PDT

With Mallorie & Josie at camp this past week, Greg & I had the opportunity to spend some one-on-one time with Emma! Though we missed the other two girls, all three of us really enjoyed this special time together.

Emma will often ask somebody the same question over and over. Some questions that I hear over & over include, “When did you get your ears pierced?” “Do you have a baby in your stomach?” (as her mother, aunt Sally, aunt Lindsay, and family friend Kristin are all pregnant right now). Another recent favorite whenever I see Emma is, “When is it mother’s day?” By this, she isn’t really asking when Mother’s Day is, but rather when it is, “Take your Daughter to work day” at my work. Emma had the chance to attend, “Take your Daughter to work day” with Greg at his work a couple years ago. Emma really enjoyed the day with Greg. Recently, this continues to be the very first question that she asks me when she first sees me, “When is it is mother’s day?”

So, this past Thursday, on his way to work, Greg dropped off Emma off at my work, at the headquarters for the Chevron Corporation in San Ramon. What was especially exciting about Emma’s visit to Chevron was that there were two Nascar drivers there on Thursday. The Texaco/Havoline cars & drivers were in the area, on their way to the Nextel SaveMart race on Sunday in Sonoma. So, Emma had the opportunity to meet Jamie McMurray & Scott Pruett. We’re not Nascar fans, but she still thought it was pretty cool. There was a professional photographer there, so hopefully I’ll get a good picture of the three of them (Emma, Jamie & Scott). Emma got to see the racecar, too. Our timing was great, as we were the last people allowed into the line & there were only about 8 people in front of us!

Though it was a fairly quick stop at Chevron & it wasn’t the official “bring your daughter to work day,” Emma enjoyed it. I walked her through the main building, cafeteria, the “Nascar area,” then to my work area where she met a number of my coworkers. Everyone was very nice to Emma. Emma continues to become more of her social self & is so polite, too. She met my supervisor, Barbara, and a coworker named Eryne (pronounced the same as my name). When we were saying our goodbyes, Barbara & Eryne told Emma that it was nice to meet her. Emma responded, “It was nice to meet you two, too.” It was cute! =)

We look forward to hearing all about Mallorie & Josie’s adventures at camp this past week!

Erin

Sunday, June 19, 2005

Happy Father’s Day to all of the wonderful fathers out there!! Greg is such a great father to his three daughters.

We have had the girls all weekend, which has been great!! Today started with breakfast in bed for Greg, of which the girls prepared almost everything. Mallorie made pancakes, arranged some nectarines and grapes, made the pancakes & some toast into hearts, and I just helped with the coffee & cutting of the nectarines. This followed with a leisurely day, then a pot roast dinner. The pot roast dinner is a Sunday tradition from Greg’s childhood that he mentions a lot. So, at 10 am this morning, Mallorie, Josie & Emma helped to peel carrots & potatoes so we could get them in the crockpot. For those of you who know me….and as I told Greg, I apparently do this only every approximately 30 years (my mother tells me about a time when I made a pot roast when she was pregnant with my sister…I was just 6 ½, but apparently it must have been the last time I cooked a full pot roast dinner).

We enjoyed a great dinner together. This was the first meal that we had in our formal dining room. We had pot roast, potatoes, carrots, corn on the cob, and Mallorie’s famous lemonade pie (another McGregor tradition). It was originally a pink lemonade pie, but she has showed a preference to a raspberry lemonade pie. We all enjoyed a great time & said “cheers” with wine (apple-grape cider for the kids – their “kid wine”).

The kids have looked forward to their last week in school, which ended this past Friday. Emma’s 2nd IEP meeting was held this past week. She will be attending Special Day School during the summer and the plan is for her to rejoin her prior class by starting 4th grade at Walnut Acres Elementary School in the fall. There was some discussion of whether it would be better for her to continue in Special Day school or go back to her original Elementary school in the fall. In the IEP, Greg fought for Emma to go back to Walnut Creek in the fall because the staff and students are so familiar and supportive of Emma. After Greg’s plea, it was agreed that it would be worth starting Emma back at Walnut Acres Elementary in the fall. Everyone is looking forward to this.

Emma has been wanting to do more on her own. Today she asked when she would be able to wear regular underwear again (as she has been wearing pull-ups since she headed to Duke last January). She has been doing much better about letting us know when she has to go to the bathroom, and we encourage her to do as much on her own as possible. Usually, this entails double-checking to make sure that she flushed & washed her hands afterward. She has also been clearing her own dishes, rinsing them off, and placing them in the dishwasher. You can definitely see a great feeling of satisfaction whenever she is doing something just like the other kids are.

Mallorie & Josie are heading off to camp for the week. They leave tomorrow morning for Camp Okizu (www.okizu.org). They have a camp for siblings of cancer kids. Though Emma is obviously not afflicted with cancer, her doctor at John Muir is an oncology doctor, so she has been allowed at the camp. Emma’s mom Sam, stepdad Drew, sisters, and stepbrothers attended a family camp there recently. Josie, Mallorie & their stepbrother Jeff will be attending the sibling camp this week. Then, Emma will be attending camp soon, too. So, lots going on, as usual!

Josie is looking forward to being a 2nd grader in the fall, Mallorie a 7th grader in the fall, and Emma a 4th grader in the fall.

Again….Happy Father’s Day to all of the fathers out there. Greg is an involved parent who often doesn’t get the credit he deserves. He loves his children dearly, which is apparent by almost everything he does. I am thankful that I have found such a wonderful, loving man.

Erin

Monday, June 6, 2005

We enjoyed Wednesday through this Monday morning with the girls. School is almost out – spring fever has hit! We had Josie’s open house last week & Mallorie’s open house this Wednesday. I recently had the opportunity to volunteer on May 26, 27, and June 2 in Josie’s classroom. She has the same teacher that Emma had, Mrs. Hartman. She is very kind and the girls like her a lot. Volunteering was fun. I appreciate the fact that my employer, Chevron, provides their employees 4 paid hours a month to volunteer.

I had the chance to spend the entire day with Emma on Friday. Fortunately, in California, there is a law that allows employees a certain number of hours per year (some full pay & some ½ pay) to care for their ill children.

I brought Emma to music class Friday morning, where there was a lot of activity! All of the girls, Mrs. Ryken, and I danced on the stage, then switched with the boys, who were dancing on the floor of the Multi-Purpose room. After that, the children sang Colors of the Wind, then Under the Sea. Finally, they played their recorders/flutes. My 10+ years experience of playing the flute helped here, so we figured out after a couple tries that it was easiest if I held my fingers over the holes & Emma blew. We had a lot of fun & I know Emma was happy to see Mrs. Ryken. Most of the kids were very friendly and tried to involve Emma, when possible. I think some of the kids are still a little leery of how to interact with Emma, but hopefully that will improve with time. Emma was also quite excited to find out that Mrs. Ryken shares the same birthday with Emma, July 3!

After we ate lunch, I brought Emma back to the Elementary School where she had speech with Mrs. Meule for ½ hour. After picking her up from the school, we went back home where her occupational therapist, Kianna, met us. She worked with Emma for about 45 minutes. Emma worked on untying & taking off her shoes, tying her shoes, putting puzzles together & other things, too (I tried to stay out of the room as much as possible since Emma gets distracted quite easily).

After Emma’s O/T appointment, we picked up Josie from school & headed to 3:15 and 4pm appointments for Josie & Emma. What a packed day Emma had. She seemed tired by the end of the day! Mallorie came home after her last Girl Scout outing of the year – a bowling event. Then, we had dinner – what else? Chinese food!

Emma has 2 different sets of orthotics that she wears. One she wears under her shoes for most of the day. The other, larger set, is worn for approximately an hour each day. We’ll try to get pictures up soon of both sets.

We mostly stayed around the house this weekend and enjoyed the beautiful weather. Greg was daring enough to go in the pool along with Josie & Mallorie (as it is still kind of cold). Emma & I hung out in the hammock in the shade.

Emma is scheduled to have her port removed this Friday morning. She is quite excited & talks about it a lot!!

Erin & Family

Thursday, May 26, 2005

We have had a couple busy weeks since our last post. Emma continues to be stable and do well. Emma has been consistent with her OT, PT, Speech, Home teacher and other at home activities. Emma’s medications are decreasing and now she only has 3 tablets a day. It is wonderful to see Emma decreasing her medications and continuing to make some progress. She is still in pull-ups and requires constant supervision, but she really is a sweet girl.

Last week when bathing Emma, I noticed a tick behind her ear! She had gone to Camp Okizu with her mom, stepdad, sisters and stepbrothers the prior weekend, which is where she most likely picked up the tick. After Erin quickly researched online that there could be infection if part of the tick remained upon removal, I decided to take Emma to the pediatrician's office where her stepdad removed the tick. The tick is being sent in to be tested, but she hasn't have any rash or fever, so that is good. As usual, never a dull moment...

A few monumental things took place this past week. A few years ago, my sister and family would meet all of us at the Danville Pizza Machine every other Friday night. The kids would play and we would all catch up with family. It was always such a fun time. The last time we were at the Pizza Machine was January 2004 just before Emma left to North Carolina. That was one night at the Pizza Machine I’ll never forget. Since Emma was cleared to go to restaurants, especially at less busy times, we went last weekend. I don’t think I mentioned this before, but getting back to the Pizza Machine was one of our goals. Just walking in there was awesome. (Silly huh? – a pizza place) Anyway, we all helped Emma play a few games including one of her old favorites, the hit the crocodile game. (Kind of like whack the mole) We all sat, played games, had dinner and started over again where we left off.
Amazing.

The weather has just been wonderful here. Since we have a pool at our house, we decided that it was time for a BBQ and a swim weekend. The family came over and we picked up where we left off a few years ago. Music, kids running around laughing and swimming. I just sat and took it all in.

It was such a fun weekend that we made a 1-minute music video of the times. It is on DVD now but I’ll have to figure out how to make it a small computer video download for you all to see. It is pretty cool. Emma’s uncle Tim plays for the band Jem and spends most of his time touring the entire world. However, he was here this past weekend. Being the artist, he actually made the movie.

The Walnut Acres annual picnic happened this past weekend, too. We all went. When it was time for the third grade to sing, Emma was assisted to the stand and sang along. She has so many friends at the school. All the kids and faculty are so supportive of her.

I met with the MDUSD district liaison for parents. Her name is Melody and I met her a few years ago in a class she was teaching regarding special education. Needless to say, I am thrilled she is involved and I can’t believe the options that are available for Emma this fall. I won’t get my hopes up just yet, but having someone at the district to advocate for Emma is wonderful.

Love,

Greg & Family

Sunday, May 15, 2005

Emma continues to improve by the week. On Thursday, Emma’s schoolteacher came to our house. As mentioned in a recent update, Emma has really liked reggae music recently. Emma asked her teacher if she liked Bob Marley. When her teacher didn’t know what she was asking, Emma again flipped on the CD! She’s such a character! I don’t think she knows much about Bob Marley. I did tell her that he was from Jamaica and reminded her about the Air Jamaica commercials we watched while at Duke. If you remember, she really wants to go there someday. We are probably about a year off from anything like that.

Emma’s physical therapist had Emma playing on the playground at her school. She was climbing the ropes & everything. I took a picture of her on the ropes, but it was a little far away & won’t post well on the site. I’ll try to get a view closer-up next time so I can post it. You would be amazed!! Emma also spent time with her therapist walking around the playground and trying out various things. One of the basic reasons is to help her start to feel comfortable in getting around the school. Emma did trip on the cement and got a pretty big bruise on her knee. She is ok though. One of the classrooms saw this happen. All of the kids ran out to see if Emma was all right. It is great that the kids know her and are supportive of her.

Emma has just started attending music class at the Elementary school twice a week. We are pleased that the school is helping in Emma's transition as she continues to improve.


After being in our “new” house for about 6 weeks now, here is our assessment so far….

It is nice being close to the school. We are about 4 blocks from both the elementary and middle schools. We are able to leave at about 10 or 5 ‘til 8am, vs. 7:20am, which is nice for everybody.

The kids are really looking forward to swimming in the pool. The weather has just started to warm up a little this weekend, so the girls are hoping to go in the pool next week.

We are still unpacking & trying to figure out where to put everything. As this house is 1/3 smaller than our last house, we’re definitely running out of space!

After moving & living in the “new” house for about a week, the girls’ mother informed us that she is moving back to Walnut Creek. This news was discouraging since the haste in moving was very costly and with a deadline, our selection was limited. We do enjoy being close to the kids’ school and friends. The kids are happy and so are the dogs (Ralph and Floyd, our basset hounds). I also save hours in the day with less driving. Big plus.

Please continue your prayers for the Trimpers and Tomainos. Both have had 2 of their 3 children with MLD in the hospitals this week. They are both such brave & strong families.

Greg

Sunday, May 8, 2005

Happy Mother’s Day to all of the mothers, stepmothers, grandmothers, aunts, and godmothers out there! Today is my first day as an “official” stepmom. How exciting!

We’ve enjoyed a wonderful few days with the girls. We went to dinner last night to celebrate Mother’s Day & saw more glimpses of the “old” Emma. What a delight! She asked the waitress her name. Then, when the waitress responded, she said, “Hi. I’m Emma.” Emma is such a socialite & has an amazing memory. If we were to go back to the same restaurant in 6 months, Emma will likely remember that the waitress’ name was Kelly!

Josie had her 1st grade chorus performance this Thursday night. Emma was sitting with her mother, stepfather and grandmother a few rows back. Upon seeing Greg, Mallorie, and me, she loudly yelled out, “Erin Williams.” (A-o-win Will-ee-ums) Luckily, the 1st graders were still warming up & hadn’t started their actual performance. It was pretty funny!

Mallorie had her 1st middle school dance on Friday night. I brought her to get a new outfit, then helped curl her hair in preparation for the dance. It is hard to believe she is old enough to go to school dances! I met Mallorie when she was just 7 – Josie’s age! Where does time go??

Emma continues to get around better. When holding her hands, she can squat down (much lower than we adults can), and can jump, too. She has made great strides physically, which we hope will continue.

Another interesting thing we discovered this week is Emma’s love of reggae music! After going to Jamaica, Greg and I had purchased a couple Bob Marley CDs. One was in the CD player in the kitchen that Emma kept turning on over the weekend. While at Duke, there was an Air Jamaica commercial that would air regularly. Emma told Greg that she wanted to go there. We hope to be able to take all of the kids there in the coming years.

I was treated to breakfast in bed this morning, flowers, chocolates, and 4 wonderful cards (from the 3 girls and Greg). Though stepmotherhood is challenging at times, I am truly blessed to be the stepmom to 3 wonderful girls.

Please say an extra prayer for Maddie Trimper. She is back at Duke in the PICU right now. (http://www.caringbridge.org/mi/trimpermld/). Continue prayers for Anthony Tomaino, too. http://www3.caringbridge.org/nj/anthonyt/ Both the Trimpers & Tomainos have 3 children who have all had transplants.

Thank you,
Erin

Tuesday, April 26, 2005

We had an eventful weekend. Josie turned 7 on Saturday, which is hard to believe! Mallorie attended a Girl Scout camping event over the weekend. Then, to celebrate Josie’s birthday, we went to dinner on Sunday at 4:30 at Benihana. Since her restrictions have recently been lessened, this was Emma’s first dinner at a restaurant with us since January 2004 in Durham! Emma’s uncle Chris & his girlfriend Erin joined us for dinner, too. Everyone had a great time.

On Saturday, Chris & Erin and Uncle Christer, Aunt Sally, and cousin Jake came over, too. Josie enjoyed opening her gifts & playing with a new bug vacuum she received. On Sunday, she was decked out in a new dress with a helmet and knee pads, using her new scooter. (Where was the camera when we needed it??) She had previously been using Mallorie & Emma’s old ones, so I think she was glad to have one of her own.

Emma was leaning a bit to the side on Friday and Saturday, but it seemed to work itself out by Sunday. This has happened before, at which time we were instructed to keep an eye on it. Emma was pretty energetic on Sunday and really enjoyed going out to dinner. Emma had started a couple chants like, “I like corn,” when Mallorie soon tried to ‘shush’ her. In Dr. Escolar’s report, she stated that we need to work on some of Emma’s social behaviors to make sure they are more appropriate for school in the fall. Nothing like a big sister to keep her in line!

Also after reading the reports from Dr. Escolar & Dr. K., we’re trying to encourage Emma to try to do more things on her own. We are there to guide her or help her when she needs it, but it is good for her to do some things on her own. You can definitely see a sense of accomplishment when she achieves even little things, which is great.

We have noticed over time that Josie’s personality really blossoms when Mallorie is away (at camp this time or at a sleepover other times). On Friday we had Chinese food (not a big surprise, as it is still one of Emma’s favorites). We read Josie’s fortune to her from her fortune cookie. It said that she is demonstrative with those she loves. After describing what that meant, she said that if you eat your fortune cookie within 10 seconds that your fortune will come true. After quickly eating the cookie, she ran around to each of us telling us how much she loved us, giving big hugs, etc. (not typical Josie behavior.) She was just cracking us up. Then, upon waking on her birthday, she was telling us how she can’t wait until she is 12 or 13 so then she can move out on her own – maybe to Mexico or New York City. (The New York City was based on the Annie movie – not sure where the Mexico idea came from.)

So, we had an entertaining, fun-filled weekend. It was really great to have Emma out at a restaurant again! Each time she is able to do something that she hasn’t been able to do for a while, it is such a blessing.

p.s. Emma’s cousin Jesse is out of the hospital & at home with Carolyn, Todd, Grandma & Grandpa Mac (McGregor) in Cayman. He’s continuing to do well. Yeah!

Friday, April 15, 2005 9:00 AM PDT

OK -- After reading the guestbook entries to Emma this morning, she said that she wanted to do another interview for you, today.

What should we talk about today? "Kicking MLD in the butt. It is hard and at least I did it. It's not so easy."

Should we tell everyone about your medicines? "I only had to take two pills this morning."

"If you live through it, you can come see me."

Emma has been talking a lot about Trevor this morning. Emma said that, "Heaven is a nice place. He's very happy to be in heaven. He's my special angel. He's in heaven. At least heaven is a nice place with God."

Tell me what you did in PT this week...."Nothing. Nothing Erin." (Though I did see a photo of Emma riding a scooter with her PT Therapist.) Emma continues, "It was hard to ride a scooter. At least I tried."

Tell me about Mallorie's party last night (that we finally had after Emma's stay in the hospital over Easter weekend & our move)..."I didn't get to stay up a lot, but I did stay up until I fell asleep. The cake was too sweet for me."

Emma wanted to talk more about about Trevor, "Heaven is a magical place. If Trevor could go in the pool with me, he would."

This was followed by an emphatic, "PEACE ON EARTH!"

"Bye Bye. The End"


We received the results back recently on Emma's immune function tests, which continue to improve. They are now in the low normal range which means that Emma's restrictions can be lessened. She doesn't have to wear her mask inside, except for in the clinic, doctor's office and hospital. Emma can now go to stores, the mall and the movies, at uncrowded times.

We also received the results back from Dr. Escolar, a Developmental-Behavioral Pediatrician that Emma sees at each checkup. Her team felt Emma has made tremendous gains in her gross motor abilities since her last evaluation. Emma's articulation of speech has improved significantly, though her cognitive and language skills have shown little improvement since the last evaluation. The group gave a number of suggestions to assist us, the school, and the therapists continue to help Emma improve.

We are thankful that so many people care about and are helping Emma. :)

Sunday, April 10, 2005 10:42 AM CDT

An interview with Emma on 4/10/05:

What do you like about the new house: “My room and Josie’s room.”
How do you like the new house: “I like it a lot.”

What else do you like: “I like Junie B. Jones, the book.”

What’s your favorite movie: “Spiderman. You should watch it.”

What’s your favorite food: “Pasta & Corn.” (sidenote…we had lasagna & corn on the cob last night)

What’s your favorite tv show: “Spongebob.”

What do you think about PT (Physical Therapy). “It’s hard.”

Josie asked Emma about her pills. I asked Emma what it was like to take lots of pills: “The yucky stuff I didn’t care for.”

Tell me about when you were in the hospital: “I watched Spiderman a lot.”

What else do you want to tell people: “It’s not easy to do it. You can die. Your hair comes off, but it doesn’t stay off.”

What else do you want to say: “Erin never had MLD.” (Emma often asks if people have had MLD or if they have ports.)

Emma liked having the guestbook entries read to her. She liked hearing, “You’re beautiful.”

Anything else you want to say: “Bye.”



We are getting settled into the new house. Emma is doing well. Her nose is still running a bit, but not as bad as last week.

Baby Jesse McGregor Trinta is still in the hospital, but is doing pretty well. Carolyn and Todd are looking forward to bringing him home.

We are headed to our good friends, Kristin & Bob’s wedding today. Emma will be staying with her grandmother for a few hours (Thanks Pat!) during the afternoon as we still don’t have her immunology results back. Plus, with her recent stay at the hospital over Easter weekend, we want to keep her well.

Erin, Greg, Mallorie, Emma, and Josie

Monday, April 4, 2005

Greetings from the newest residents of Walnut Creek! We are finally done moving. (Notice…I didn’t say done unpacking.) What a chore…

The girls joined us in the new house on Saturday. We think it will be much better for Emma with just one stair in two different places in the house (the living and family room sit just a little lower). Plus, there is the pool for her to use once it warms up again. That will be good for her therapy. The girls played outside with their cousins, Connor & Jake (while their parents, Sally & Christer, were stuck helping us unpack the kitchen), on Saturday and a couple neighbors. The neighbor girls knew Emma from school. She’s practically a celebrity there!

Being just about 2 ½ blocks from both the Elementary school and Middle school will be great for all three girls. No more traffic, construction, etc.. in the way of getting them to school. Yeah!

There was an earlier than expected addition to the McGregor family this weekend. Emma’s Aunt Carolyn (Greg’s sister & my good friend – the one that introduced the two of us almost exactly 5 years ago) delivered her baby nearly 2 months early, on Saturday. Jesse McGregor Trinta weighed in at 4 lbs. 8 ozs. Carolyn and her husband Todd live in Grand Cayman, so Jesse was delivered there. He is in ICU, but seems to be doing o.k. Please say an extra prayer for them.

Emma is still a little congested. Her nose is running a bit & she has a cough, but the doctors said that it would take her longer to recover from an illness, so we’re not too surprised. We just want to keep her healthy & out of the hospital.

Josie & Mallorie were back to school this morning & Emma was back to her routine – including homebound schooling, occupational therapy, physical therapy, and speech therapy. Busy busy… The girls are back Wednesday - Sunday this week. Hopefully we can make some progress on the boxes then!

:)

Erin (& Greg)

Wednesday, March 30, 2005 10:42 PM CST

Just a quick update. Emma seems to still be doing well. It looks like she's fought yet another battle & kicked butt again! Thank you for all of your support! Greg spoke with her & she was watching Spiderman, so didn't have much time to chat! I think she's getting back to her normal self.

We're moving this week. We thought it would be just Wednesday, Thursday, and Friday, but now it looks like it will be extending to Saturday, too. The girls have already spent their last night in our Martinez home & look forward to coming back to our new house in Walnut Creek. (And we just can't wait until the moving is over....)

Love to all from Martinez (for the moment....)

Erin & Greg

p.s. Again for those of you who may not have checked in recently, there is a photo on the "view photos" page of Emma on Easter at John Muir Hospital.

Monday, March 28, 2005

Emma was released from the hospital today. Yeah!! We're happy that her temperature has lowered and her vomiting has ceased. Thanks for thinking of Emma, your e-mails, and good thoughts for her. We really do appreciate it!

Happy Birthday to Mallorie!! She is 12 years old today! She has been a great big sister to Emma throughout the last year and more. We really appreciate her help!

We hope to be back with more good news about Emma's health soon!

Erin & Greg

p.s. If you haven't seen it already - there is a new picture of Emma on Easter - while in the hospital.

Sunday, March 27, 2005 12:50 PM PST

Happy Easter

Emma has encountered a bump in the road, but she’s staying strong & fighting hard, as always. She had a fever and was throwing up on Friday afternoon, so she was admitted to John Muir hospital on Friday. Her fever spiked as high as 104, but then came down. She received fluids and other things though IV (via her port) to fight whatever ‘bug’ it is that she has. Her fever came down and she was stabilized enough at the time for her to be released at about 1pm on Saturday.

Later Saturday afternoon, her fever returned and she was throwing up again. She was readmitted into John Muir at about 5:30pm. Greg & I went to the hospital at about 7:15, when Emma was back in the same room as the prior day. Then Greg stayed the night at the hospital with Emma last night. Her fever was at 103.3 just before 9pm. She was able to sleep a bit, after not sleeping much the night before. She woke up at about 10:30 or so last night and was more alert and felt cooler. It was strange, though, because at about 8pm, her head was hot & her hands were freezing. At about 11pm, her head felt more normal, but her hands & feet were really hot. I left soon thereafter so I’ll have to have Greg give the official report.

Emma’s temperature was recently taken late this morning & it was approximately 101. So, she will stay the night again tonight at John Muir. John Muir is the local hospital in Walnut Creek (where we are moving this week) where Emma usually goes for her lab work and visits with Dr. Smith.

Please keep Emma in your prayers. We are sure she will recover just fine from this, but it never hurts to have those extra thoughts & prayers!

Thank you,
Erin (& Greg)

P.S. The middle picture on the photo page is a photo of Emma on Easter day in the hospital.

Sunday, March 20, 2005

Well, we had a fairly eventful week. We have possession of our “new” house now! We met with our Brother-in-law, Christer, on Tuesday night to decide on colors for some of the rooms. We’re thankful that we have a painter in the family! He and his crew worked Wednesday through Friday. They worked really hard & it’s looking good!

We had all of the girls on Wednesday & Thursday this week (following our 5 day week last week). Emma continues to do well. I was pleasantly surprised to see some marked improvements in her academic skills. YEAH! We have seen great improvements in her physical abilities over the last few months and had hoped the academic abilities would come. Well, it appears that she is starting to progress in that area, too. We are so pleased. This should keep her on track to be back to school in the fall. How amazing is that?!? The new house is just about 2 1/2 blocks from both the elementary and middle schools, so all 3 girls will be very close to their schools. I think everyone is looking forward to that!

Emma and I hung out at the new house on Friday morning. We brought folding chairs and borrowed Mallorie's DVD player to watch some movies while we waited for the phone guy & cable guy to show up. We started with Agent Cody Banks, then watched Shrek 2. It was nice to spend some one-on-one time with Emma. Her mind is so much more active now. She is curious & constantly asking questions, which is great! Emma’s Aunt Sally (Christer’s wife) and Emma’s cousin Jake (aka Bubba) came by Friday morning to see the house. Jake and Emma colored for a while, and then watched some SpongeBob Squarepants together. Sally sat with Emma while I grabbed lunch for us, then I dropped off Emma at her Grandmother’s house at 1. Emma and I had a really nice morning together!

We plan to move while the girls are out of school during spring break, as they are with their mother this year. That will give us time to move without disrupting our time with the girls. So, more to come….

Erin (& Greg)


p.s. Happy Birthday to Emma's uncle Matt (my brother). He turned 21 on St. Patty's Day! (Erin Go Braugh! = Ireland Forever)

Sunday, March 13, 2005 1:55 PM CST

What a great day we had yesterday! My friend Becky, Mallorie, and I headed to Jackson White’s house at about 10:30 (www.jacksonwhite.com). Jackson is a young boy with Krabbe Leukodystrophy, who lives about 10 minutes from us. We worked steadily until lunch pulling weeds and painting. I had the chance to meet Jackson’s Grandma Margy (Meme), who happens to have the same birthday as me (Jan. 16)! Margy and I talked a lot about Jackson and Emma, what we did to prepare our house for Emma’s return from Duke, Emma’s progress, and more. Margy served a wonderful lunch to all of the Rotary volunteers (about 15 of us). It was great for me to see members of my “old” Rotary club (since I have transferred clubs since my job transfer in November).

The highlight of the day was Emma’s visit to Jackson’s house. Greg & her timing was perfect because most of the volunteers were eating lunch in the back, so Emma got out of the car and walked around with me a bit, seeing the outside of Jackson’s house & backyard. She, too, met Meme, who took a few pictures. Then, Emma was headed back to the car where she was greeted by many of the volunteers (at a distance), most of whom she had met before, at my Rotary meetings. The club was very supportive of Emma, me, and our whole family during the last year or so (especially considering I was president of the club when Emma was first diagnosed and during her first 6 months at Duke). Mallorie headed home with Greg and Emma, while I stayed and painted until about 4:30. (I know Greg wished he could have helped, but Emma has to keep her distance still, until we have the results from her recent immune system tests.)

I was happy that my friend Becky drove 40 miles to join us and was also happy & proud that Mallorie was willing to help out (she is almost 12, you know!) :) The house isn’t done yet, so it will likely require another crew next weekend. It was a long day, but a wonderful one. Meeting Meme, spending time with old friends, working for a good cause, having Emma stop by for a visit. What more could I ask for?

:)

Remember – if you haven’t looked at Emma’s new photo of her on her trike, please do so! She continues to kick MLD butt!!!!

Love to all~
Erin

Friday, March 11, 2005 2:13 PM CST

Check out a new photo of Emma riding her 'big girl' tricycle yesterday!


She's doing great!

We worked on her homework last night....many pages of math!

She really is such a trooper - in all aspects!

:)

Tuesday, March 8, 2005

Okay - we aren't still at the airport we did make it home to California.

Dr. K released Emma's test results and Emma is stable. All of her tests basically show that she has stablized. The only thing that we are waiting for is Emma's immune system tests. Those tests will tell Dr. K where Emma is and when she can start to do more "normal" things.

We have more PT work to schedule since Emma does have tightness in her feet/legs so that is just something we'll have to work at. However, that didn't stop Emma from trying to show Dr. K how she "skipped". She didn't skip so well but she sure tried to do that.

Emma and her sisters are excited that we are moving to a new house right next to their schools. Emma is pretty excited about our new pool. Emma used to be a little fish during the summer time so I'm guessing that she will again soon. :)

Her medications have decreased yet again. Her donor cells were at basically 100%.

Now that we're back, we are headed to Jackson's house to help out with their home (painting and the like) before they get home. Very Exciting!!!

Best Wishes,

The McGregors

Friday, March 4, 2005

Emma finished all of her tests! Yeah!!!

Thursday was a full day starting with the Nerve Conduction tests. As far as we could tell, things are the same as 3 months ago. That is great news.

We spent the rest of the day working the an EEG, BAER and other tests. The brain stem test required her to sleep so she was given 10mg of Valium. To say the least, she slept. Emma went to visit Nurse Sue and Jennifer. She could hardly stand. Maybe next time we'll time that differently. Emma was very happy to see them.

We are currently on a layover in Phoenix. America West put us in the club area in a board room so that Emma could sprawl out. Cool huh?

We'll give out more details once we get home on all the tests and good stuff. All in all, things are well.

- Emma and Dad

Wednesday, March 2, 2005

Well, we finished a full day of tests. Emma started out with an Echocardiogram, followed by her vitals, followed by a heart x-ray, followed by an MRI of her brain. We started at about 10am and finished at about 4:30pm. We were hoping to see the Whites today and we did, but only in passing at the clinic. Before I could catch up with them, we were off to the next test. :(

At the end of the day, we went to the 5200 to find nurse Sue, but she was at the weekly staff meeting. Emma was quite excited to walk the halls to check everything out. I was shocked. We did run into nurse Brooke, which was great. She was headed to California but was back for a brief period. Emma didn't quite remember her at first. When she did, she was really happy. We played a lot of Harry Potter UNO with Brooke and Jill. Emma also played a little basketball on the old hoop. I have a few pictures of that.

We won't have any results for a while but Emma did well today.

Tomorrow we have a lot more tests so it is off to bed.

:)

- Emma and Dad

Tuesday, March 1, 2005

We had another day of tests and waiting in clinic. Emma started off with her developmental tests with Dr. Escolar. Those evaluations take about 4 to 5 hours. Emma was tested on hearing, speech, memory, following directions, walking, running (yup some attempts at running), shape assocation and some abstract associations. It was nice to watch her work through all of those tests and evaluations. One clear thing that Dr. Escolar pointed out was that we need to get custom inserts (custom made) for her shoes to support her feet. Her feet are started to shift, which is causing her knees to move which in turn affects her spin which leads to scoliocis. Ahhh... Anyway, Emma will need some shoes, some nighttime shoes and some gloves. The gloves are because she has been clinching her hands (for a few years now) which is more like spasms. The gloves apparently help at night with that. Despite Emma making good progress, we have even more work todo so that she doesn't slip in other areas.

Emma waited patiently for about 6 hours for Dr. K. Dr. K and staff spent time with Emma. Emma showed Dr. K all the new stuff she is able to do and had colored a picture for Dr. K.

Dr. K also mentioned the tightness in her ankles and repeated the same recommendation that Dr. Escolar did without having communicated with her. Anyway, we won't have many of the test results back until next week but tomorrow is full.

Emma also had a lot of bloodwork done today. At the end of all of those tests, we forgot to take out her "access" to her port. The "access" is a device with a clamp and tube that hook right up to her port which hooks into her arteries. Anyway, after getting back and attempting to get her into the bath, we noticed. Back to the hospital at 10pm to the 5200 for them to remove it. Yuck.

Anyway, Emma and I are tired and headed off to sleep now. We have a lot more tests tomorrow. I have a lot to talk about but will have to wait when I have more time.

(We're also hoping to run into Jackson White and family tomorrow near the clinic)

Best Wishes

- Emma and Dad

Monday, February 28, 2005

Emma just finished Day 1 of her one year post transplant tests. It was a really easy day because we went to a movie at noon and went for her eye tests after that. (Not a typical day) Emma saw the movie "Because of Winn Dixie" and she really liked that. A huge bonus was that we were the only ones in the theater.

Emma's eye tests went well. Her eyes are stable and her cataracts are not any worse. She still tested as 20/40 in her right eye and 20/50 in her left. Dr. Green said that we would just have to wait and see whether or not Emma would require cataract surgery, but for now she should be fine. She should continue to wear her glasses outdoors to help with the bright lights and indoors when it is too bright for her. (In general, outdoors.)

Tonight, Pat, Emma and I had dinner with Maddie, her brother Ethan and her parents, Joe & Richelle. Maddie checked into Duke a year ago when Emma did. Pat and Sam have kept in contact with them as I have not. It was nice to see them and get to know them all better. I wish them well. I am actually hoping to contact the Whites as well.

We are off to sleep now as we have an early morning and LONG day at Dr. Escolar and at clinic.

- Emma & Dad

Sunday, February 27, 2005 9:44 PM PST

Greg and Emma were up early this morning, leaving our house at about 6:30am, so they could start their travels to Duke, along with Greg’s ex-mother-in-law, Pat (Emma’s maternal grandmother). They all made it to Durham safely. Emma starts her first tests tomorrow, with an eye exam scheduled in the afternoon. The removal of Emma’s port was not scheduled for this trip, so it looks like that will happen when Emma returns to California, likely at UCSF.

After first being awoken early by Greg & Emma, I was later treated to breakfast in bed by Mallorie & Josie! What a pleasant surprise that was (it almost brought tears to my eyes – really!). I was totally impressed with and touched by their efforts. The three of us enjoyed a wonderful day together. We got quite a bit of homework done, prepared for (academic) tests, and even fit in a movie. I think it was good for all three of us to have some special time together doing fun stuff.

I look forward to sharing good news throughout the week & will keep you updated on Emma’s tests.

:)

Erin

Saturday, February 19, 2005

Emma got her new cells one year ago today. Happy Transplant Birthday, Emma!!

Emma is still having some difficulty with balance, so we’ve all been keeping an eye on her, doing some additional tests and are keeping in touch with all of her doctors. The timing seemed to work out well for her 1-year post transplant visit to Duke so they can check out what is going on. Greg, Sam, and Emma head back to North Carolina on Sunday, February 27, with Emma starting her tests on Monday, February 28.

We are so proud of Emma and how far she has come.

We are so thankful to our friends, family, employers, coworkers, Rotary family, and our newfound online friends and Caringbridge followers who have been so supportive during the last year. We couldn’t have done it without you. We love you all.

The McGregors

Monday, February 14, 2005

Emma had a good week and a small scare. We had an open house yesterday (as we are still trying to sell our house in Martinez), so we took Emma to her mom’s house around noon to avoid the people. At some point yesterday afternoon, Emma was having difficulty walking and around 8pm was having difficulty sitting. Sam called me to ask if I had noticed anything strange. I had noticed that she wasn’t as stable as always, but then again, Emma can have on days and off days. At any rate, that led to series of calls and pages to Dr. Smith, Dr. K and the Duke staff. It was difficult to tell whether or not to head right to the hospital or whether she was having a muscle spasm. Not fun. Dr. K eventually got back via phone as she was in Colorado on a business trip. She said to let her rest and wait to see in the morning. This morning Emma feels fine so the current theory is a back muscle spasm. The smallest things can be so nerve racking.

Overall, Emma seems to be progressing physically more so than mentally. We’ll have to have the Dr. Escolar tests in a few weeks when we are back at Duke to see. However, Emma seems to continue to better herself physically almost weekly. This week she was jumping up and down (a millimeter off the ground) with Nell, her PT therapist. Emma is also able to get up and down from the ground on her own, so that is really great to see. She walks like a toddler when walking around, but she is doing it on her own.

Emma’s teacher has given her a bunch of homework so we worked on that this weekend. She can do the simple math addition but cannot take one away from four. Pre-transplant, Emma could do single digit addition and was working on simple double-digit addition but could not do the simple subtraction. I think that when she is able to do single digit subtraction that will be a good milestone. Things definitely “appear” stable for her mentally but I just haven’t seen the improvement as much mentally as I have physically. Hopefully that will come. Erin was working with her on her spelling and subtraction and was noticing the same things.

We are happy as Emma is now hitting her one-year post transplant anniversary this Saturday. It is weird. It is hard to believe that a year has already gone by & last February also seems like a lifetime ago!

Happy Valentines Day!!!!

Love,

The McGregors

Monday, February 7, 2005

Emma had another good week. She seems to be doing well. She is up and around more often this week than in the past weeks. She initiates getting places or going to get things. The other night after I put Emma to bed, she was up about 10 minutes later standing next to me in the family room. Cool!

Emma has homework, which includes math, reading, spelling lists and more. She is working more on 2nd grade materials, which her teacher feels is going better. Emma seems to be more cognicent.

Emma’s medications are nearly gone now. She is on her last doses of cyclosporine and that will end Feb 18th. She is left with some blood pressure medications and a few other ones. Emma is actually looking forward to her trip to Duke this time (unlike previous trips). She is excited to get her port out and has been talking about that a lot. She definitely sees the progress she makes and is very excited and happy about that.

We are starting to plan out our move to the new house later in March now. We still have to sell our current house, though. We are having a brokers' tour and open house this week. Hopefully that will all go well. The girls have tentatively picked out rooms, so that is good. Emma hasn’t seen the inside of the new house yet, but she is excited about being close to school, her friends and especially the fact that we will have a pool in the back yard. Swimming was one of her most favorite things to do in the summer. It will be nice to see her out and doing that at some point. (I think we have a ways to go.)

Oh – I almost forgot to mention. We have about 15 (fairly steep) steps leading up to the front door at our current house. Usually I stand behind Emma to help her with both hands up the stairs. It is a good workout for her. However, this past week I only held Emma’s hand and she made it up the steps. This is a big thing for her. Before we left for the transplant at Duke, Emma couldn’t understand why she needed a transplant. I tried to give various examples of why. One of them was that before transplant she needed help up the stairs and I said that it would get worse without a transplant. Getting up and down our stairs in the front of the house is a big thing for her. She was pretty motivated and excited about getting up those stairs with only one hand helping this week. She remembers.

- The McGregors

PS - Emma's sweet tooth is back too! :)

Sunday, January 30, 2005

Another week has passed. Emma seems to be up and around more this week and told me just the other day that it felt good that she can get up and go where she wants. She has been talkative and very helpful. We have purchased a house in Walnut Creek and are now attempting to sell our house here in Martinez (yeah – backwards, but it is a crazy market). All of the girls really helped get the house together for an open house this weekend. Emma asked a lot to help, so we found various things for her to do. Since she continually works on her balance and strength through OT and PT, we had her put away some dishes and other things that required her to bend and stretch. She was pretty happy about that and it was nice to see her excited about being able to help out. (I have a bunch of pictures that I intend to put up on her foundation’s site http://www.emmasfoundation.org. I’ll get to that soon.)

Her medications continue to drop. I am hoping that most of them are gone by March. We have been scheduled to do Emma’s ONE YEAR POST transplant check up the week of March 1st. Can you believe it has already been a full year since transplant? What a year it has been.

There are a lot of little cute things she has done this week and some of them witty. It is nice to see things progressing. She asked me for the name of someone I didn’t know the other day and I said, “I don’t know their name.” She laughed and said, "That is a funny name - 'I don’t now their name.' ” It might sound silly, but seeing her connect the dots and make a joke of that is sure nice.

Emma is still in pull-ups 100f the time, which I am hoping will get better over time. She also has very dry skin. She seems to go through a lot of special creams and lotions. Her skin just soaks them up. I guess this is just a side effect of the reduction in her medications.

All in all, it was another good week and weekend. I look forward to another positive week and am crossing my fingers that we sell our house soon.

- The McGregors

Monday, January 24, 2005

The show was great last night. If you have the chance to catch it, there is a follow up tonight, too, on ABC - Extreme Makeover-Home Edition "How'd They do that?"

As most of you have heard directly from us or via this site, we have been looking for a house in Walnut Creek so the girls will be able to continue in their same schools & Emma can continue her services through the Mt. Diablo school district. Since the girls’ mother moved out of the school district in November, we have been actively looking for a house, trying our best to ensure stability for the kids.

Well, we have finally found something. It is 10.5 miles from our current house. However, it is 30 years older, 2/3 the size of our current house, has 1 less bedroom, a smaller lot, yet is costing us 72 percent more than our current house (that we purchased new in 2001).

The positives…the house is located only a couple blocks away from both the elementary school & the middle school. The girls will be able to continue attending their current schools & Emma will be able to continue her services until she is back to school, likely in the fall. All three girls are so excited about the new house, especially since Mallorie & Josie are currently commuting 20-30 minutes each way from the two houses (5 days a week!)

This is a big sacrifice, but we feel that it is truly in the girls’ best interests, so we are trying to continue to look at the good side of it all...

As Emma continues to get better, we are able to spend more time at our house with her. We look forward to the future, when she will be back on the same schedule as her sisters (1/2 of the time-- 2 days one week; 5 days the next).

Thank you all for your continued support and encouragement. We truly appreciate it.

Greg & Erin

Sunday, January 23, 2005 4:28 PM CST

Tonight on ABC – The Extreme Makeover – Home Edition with a local young lady with Krabbe Leukodystrophy (a "cousin" to Emma's MLD, more info at Hunter's Hope). Also – Monday night, there is a related Extreme Home Makeover – How’d they do that? related to the Sears’ family, too. We first heard of Jhyrve through our neighbors, whose daughter attends school with Jhyrve. Then, Greg met Jhyrve & her mother at Duke during Emma’s recent 9 month checkup. While Greg was back at Duke, it was announced that the Sears family had been chosen for the home makeover! There was too much mold in their house, so Jhyrve & family were unable to return to Martinez, our (current) hometown, until their house was fixed.

The photographer in Erin’s Rotary club, Dirk Wentling (who also did the family photo on Emma’s photo page), was involved with the home makeover show! He took a photo of Jhyrve’s friends at a local drive-in theater, then the photograph was made into wallpaper for her room (I’m sure we’ll see much more on the show!). A good friend of Erin’s coworker at ChevronTexaco worked with the moving company who helped get the Sears’ belongings out of the home before demolition & back into the home after the new house was built.

So, Jhyrve is adding to Martinez’ claims to fame. Martinez is the birthplace of Joe Dimaggio, is the rumored home of the Martini & now this!

Check back tomorrow for more information on our home search....

Erin & Greg

Sunday, January 16, 2005

I’m not sure how to describe this week. As things approach something that resembles normalcy, I realize how far we’ve come and also that we have a long way to go.

Each week Emma’s hair grows more, she walks better, she talks better and maybe it is now that I have started to look at where she would have been. Don’t get me wrong, I am beyond thrilled with where she is, but at the same time look at what she has lost and what we have to do to get that back. I surely can’t complain, and even this week as we played UNO Attack, she actually followed the rules completely without prompting -- not bad. However, as we did spelling, her younger sister was helping her with the words.

Emma is truly doing better each and every week and she astounds me when I don’t see her for a few days. What truly is amazing though, is that Emma realizes where she is at and still chants, “Hurray!” whenever she improves, even in the slightest. I thought I was strong and positive, never letting go of goals, but Emma brings a whole new meaning to that.

As you might suspect, Emma has had another good week of progress. She prompts herself to get up and to do things on her own without as much help. She is able to play board games better and remembers things much better. For instance, a few months ago, answers might have taken five or more seconds, yet today playing UNO attack, she is quick to catch her mistakes and remember the rules. All of this is truly a blessing.

Emma and her sisters spent the night in Emma’s queen size bed. They were all very happy to be able to do that. It was the most wonderful site to feel whole. I think all of the girls felt that way.

Today is Erin’s birthday. What a year this past year has been. Emma made a card (with her sisters’ help) for Erin and we began to celebrate her birthday with breakfast in bed. Emma was the first to barge down the hall (while we were getting our act together) and knock on the door to give Erin her card first. Emma seemed to want to spend a lot of time with Erin Saturday and Sunday. It was very cute.

We are off to start another week. I pray for more continued progress and am so thankful for what we have thus far.

Love,

Greg

Sunday, January 9, 2005

Emma had a pretty good week this week. We are continuing to lower her medications. Some of the side effects such as very dry skin are occurring. Emma is going through a lot of lotion/creams right now. It is very nice though to see the medications decreasing. With any luck most all of the medications will be gone by the first part of March.

Emma has been making some physical improvements this week. I was astounded to see her get up from the couch and bend down to pick something up (using one hand on the table as a support) and then get back up. She has been working with her OT and PT therapists to just learn to bend down. I was shocked and very happy to see this. Emma is continuing her services. In her PT session(s), she has been working on strengthening her core through some exercises revolving around twisting and supporting with her hands. She has been working on her balance by standing on 2x4s (actually things that look like 2x4 pieces of wood but are made out of something else). She is able to stand and balance on them for a little bit. That was nice to see.

Emma’s hair continues to grow and she already has had one haircut. We are all very excited for the future and pray that things continue to go well.

Love,

The McGregors

Sunday, January 2, 2005

Emma had a wonderful New Year celebration. We ended up watching the 9pm pacific version of the New York countdown and toasted out the year (with sparkling apple cider) and to a new year with Emma continuing to kick MLD in the butt. Emma played a lot of games with all of us. Emma received Uno Attack for Christmas from a friend of Erin’s, Kim, who follows this website of Emma’s. We played a bunch of Uno Attack over this weekend as well. Emma sure got a kick out of the flying cards and pressing that button.

Over this past year, Emma has been asking to see a very close friend of hers named Blaine. Emma and Blaine began playing together at a very young age and have been close friends. Since Emma’s diagnosis on December 30th, 2003, Blaine moved out of state. Over the past few weeks Emma was asking for “Blainey” a lot. I just kept telling her that we would see her sometime. As luck would have it, Blaine was here over New Year’s to visit her dad. Blaine, her sisters, dad and step mom came over to our house on New Year’s Day so Blaine could visit with Emma. Emma was so excited the night before, she had a hard time getting to sleep. It was an interesting visit because I’m sure Emma wanted to get up and run around with Blaine. However, she was obviously limited as she has just learned to walk again. Anyway, they played Clue (Blaine, her two sisters, Emma and her two sisters) for a while. It was so great that she was able to have her friend come and visit. It really meant a lot to Emma. Blaine is due back over spring break and this coming summer, so Emma is going to work hard so that she is able to play more, especially by summertime. (I do have to say that the visit was a big reminder of how much Emma has lost.)

Emma is on target for reducing much of her medications over the next two months. We are supposed to watch her skin, blood pressure, appetite and other things while her medications are being reduced. We have to stimulate her endocrine system (I think that is correct) as the meds have taken over for her body for a long time. A professor at UCSF explained it one time, but I didn’t quite follow it all.

We are all very excited about the upcoming year and the possibilities.

Happy New Year,

The McGregors

Monday, December 27, 2004

We just finished our Christmas weekend with Emma. We picked up Emma, Mallorie & Josie at their mom & stepdad’s house on Christmas Day at 1pm. We came back to our house and first opened presents from Santa, then started on the multitude of gifts under the tree. We try to keep some structure so everything is not completely chaotic, so we go from youngest to oldest, opening one gift at a time. It seems to work well, though we are usually opening gifts for a good hour & a half! The five of us sat down together for Christmas dinner, which was so special for us, considering the amazing
year we’ve had.

Emma is doing really well. Her congestion is gone and her meds are being decreased. Due to the decrease of meds, her skin is drier than usual. We’re using extra lotion and cream to keep her moisturized. Starting today, she is only taking one liquid medication, which is great! The rest of her meds are in tablet form, which she takes like a champion. She is walking better all of the time. We didn’t even bring her walker with us to our house. She is getting around just great!!

The girls’ cousins, Kyle and Christian, and their aunt Nicki & uncle Lance came to visit from Nevada for a couple days. Emma enjoyed seeing Kyle & Christian, as she hasn’t seen them since before she headed to North Carolina in January.

As we are approaching one year post-diagnosis (on 12/30), it is amazing to look back at all that has happened in the last year. We are so thankful that Emma has ‘kicked MLD in the butt’ and is doing so great overall. We have met many new families who are affected by MLD and similar disorders. We are saddened by the new friends we have already lost to these terrible diseases, but will have a place in our hearts for them forever.

Love,

- The McGregors

Friday, December 17, 2004

Emma’s medications have changed since Duke and she is working towards getting rid of them over a period of months. Everyone is very happy about that.

We had an IEP regarding Emma today. The main focus was for speech and PT services for Emma. Since Sam has moved to Lafayette and Erin and I are in the process of moving to Walnut Creek, the districts have been great at coordinating the services. It appears (waiting approval) that Emma will retain her OT, Speech, Academic Teacher and school PT all through her existing school district yet coordinated as a transfer from the other school district. (She also has medical services as well) Way cool.

The IEP is growing. We had about thirteen people there today, people from the school, the district, the other district, the regional center (our advocates) and the professionals helping Emma. One common theme is that everyone was amazed at the weekly progress that Emma has made. She continues to gain in some area weekly. In fact, her PT therapist from her school has set “high” goals thinking Emma will obtain them by the end of the year.

Erin and I are still looking for a home in Walnut Creek and haven’t had too much luck yet. We are hoping that homes will open up after the New Year.

As far as Christmas, Emma is asking for a punching bag. Go figure. I’m guessing it is from all the Karate her sisters and I am doing. (I help teach the girls classes).

Happy Holidays,

The McGregor

Sunday, December 12, 2004

Emma is back from her trip to Duke and finished all of her tests. If you haven’t followed the past week, Emma’s MRI was stable and slightly improved. Her nerve tests were “unofficially” improved as well. This is very early and more than anyone could ask for.

Emma had a lot of free time on Friday since our plane didn’t leave until the late afternoon. We decided to go by the 5200 to see the doctors, nurses, the Trimpers and the Whites. It was a little strange being back in the unit after having spent so much time there. Emma was able to visit Maddie Trimper and meet Jackson White. I actually met Jeff Trimper, Marshal & D’Anne White (in person) for the first time. That was nice. Emma is doing very well and she was able to see her nurses too. Her primary nurse was Jennifer who happened to be on duty. I think that was good for Jennifer and the other nurses to see Emma’s progress. Dr. K was there too but we only saw glimpses of her. After a little while, Emma began pushing me to leave the unit, as I’m sure it wasn’t the most memorable place she has been.

We picked up some more medications at the pharmacy and an antibiotic for Emma, as she was a little congested. After that, Emma wanted to see the Polar Express so we went to see that. Emma sure enjoys being able to do normal things again.

The plane trip back was a little long but it was nice to get home. Emma will continue with services this week and we are getting ready for Christmas. We have a big IEP this Thursday to figure out Emma’s services since Sam has moved from the area. Erin and I are looking for a house in Walnut Creek so we are trying to keep Emma’s services until we get there and to plan how Emma will reintegrate with school next year.

Happy to be home,

Greg & Emma

Thursday, December 9, 2004

We finally completed all of Emma’s tests. These past few days were packed full of places to be and tests to be run. I think the most encouraging things from the tests have been that Emma is stabilized and slightly improved. That goes for her MRI and “unofficially” from her nerve conduction tests. Stabilizing the peripheral nerves was one of the hopes for using cord blood stem cells as opposed to regular peripheral cells or cells from Marrow. This is wonderful news.

During Emma’s last test today, the nerve conduction test, we kept asking the resident if things were better or worse than last time. In the end, it would appear to be the case. Dr. K hasn’t seen those results yet but this is all promising. After that (not so fun test) was completed, Emma went to see the Sponge Bob movie (there was no one else in the theater so that was really cool and much easier). It is sure fulfilling to just sit and watch Emma do something normal.

We had our end of the week review with Dr. K and Sue. We reviewed what test results they had received at that point (I guess some of them can take up to a month – donor cell test, immune system tests etc). Everything looks good and on target for Emma. Dr. K wrote out a plan to start to decrease Emma’s medications with potentially not having any (maybe except Cortef) by the next trip in February. Dr. K also said to push the school district to have Emma start at Walnut Acres next September rather than a special Ed school and/or classes at another school. (Walnut Acres is Emma’s elementary school) I think one of the most promising things that we heard tonight (yes – Emma was present) was that it is possible for Emma to be near “normal” in 5 or so years. I can’t even imagine that at this point but wouldn’t that be something. In asking more about that, there really is only about up to 5 years of data on cord blood transplants with MLD patients and not many more year’s data on MLD with BMTs so we are charting new grounds. However, things look promising and we are all happy; especially Emma. In fact, with all of this good news, Emma leaned over to me at one point and said “Dad, I thought I would never get better but I am!” Everyone was happy at the meeting. (We took a group photo, which I’ll have to post later).

The restrictions on Emma are the same and might change in a month after Dr. K sees more of Emma’s test results. We just need to be on the safe side with the flu season coming up. Also, Emma has a congested chest right now so she will start an antibiotic tomorrow to help with that.

Erin and I took Emma to Red Lobster last January before going into the 5200. Emma has talked about Red Lobster over and over since then. So we asked Dr. K if cooked Crab and Shrimp were ok for her. She gave the thumbs up and I guess you know what Emma had for dinner. J

There is a lot more to share but I’ll have to try to condense the information and put something up this weekend. We leave Duke tomorrow and are home late tomorrow night.

Happy at Duke,
Greg & Emma

Tuesday, December 7, 2004

Today was Day 1 of Emma's 9 month post transplant checkup. It was a very, very full day. We started at 8:45 am this morning by having Emma's eyes tested at Dr. Greene's office. Dr. Greene went through his regular set of tests. At
Emma's last visit (September) she had 20/30 vision and today she had 20/40 in one eye and 20/50 in the other. So, her cataracts were worse than they were before. Dr. Greene said that nothing would really be done until she hit 20/70 or 20/80 and then she might need surgery. However, (skipping ahead 10 hours for a minute) - the steroid she was on was dropped so we hope that she won't continue with worsening cataracts.

From Dr. Greene's office, we went back to the CHC for the 10am blood and vital tests. (We also had an echocardiogram at 10am.. hmmm... Can you say 2 places at once?) Anyway, we waited in the lobby until about 11am for out blood and vital tests when we realized that Emma's MRI was scheduled for
11am. (They are short staffed right now at Duke.) So, someone eventually helped us and we had Emma's blood tests done. We rushed to the MRI (skipping the echo). We didn't wait long for the MRI. I went in with Emma and sat with her. These darn MRI machines are really intimidating. Anyway, we went through some of the tests but she kept moving her head. The technician brought Emma out and when she saw me she started to cry. She was scared. Although she has done this 4 times, crying was a first. (She is
cognitively increasing?? :) ) Anyway, we eventually got through the MRI tests (Sam actually came in and laid in the machine with Emma. I'm a little too large for that.)

When we finished the MRI we went back to the 4th floor at the CHC to wait for Dr. K. We found Santa downstairs and a bunch of the kids from the CHC were down there. Emma sat on Santa's lap and was able to tell Santa what she wanted for Christmas. That was pretty cool.

Back at the 4th floor, we waited again for a long while (2-3 hours) and a nurse said to go and have the echocardiogram done. We went to the main hospital and had that test done as well. We made it back to the CHC about 4:30pm and waiting until about 8:30pm to see Dr. K. Before seeing Dr. K, we went on a walk and ran into Jhervye, Jhervye's mom and brother. We also ran into the Gwinns and Ashleigh. That was neat. Jhervye lives close to us in Martinez and took over Emma's room while at Duke (5211). Her mother was telling us that 5211 is now called the "California room." Anyway, people seem to be doing well and on the right track.

Eventually, Sue (super nurse practioner) and Dr. K (with staff) came in to see Emma. First things first: Emma's MRI has stabilized and slightly improved!!!!! No Joke!!!! WOO HOO!!! After Emma's diagnosis, when I was trying to figure out what to do for Emma, I was told by every other institution that this was not possible. When Sue said Emma's MRI had improved, everyone began to cry including Emma. Emma was so happy to hear those words. She knows what that means!!!

Dr. K checked her out. Basically, Emma is on target and actually things are happening ahead of schedule. She is doing great. The nerves in her feet were responding to touch (something I first noticed a few weeks ago), she walked for Dr. K, spoke with her and in the end, gave Dr. K a BIG hug.

It is nearly 11 pm and we have to be up early to get going again for Day 2. I wanted to share the awesome news with everyone. Hopefully Day 2 will bring more good news.

Oh yeah - Emma also has a bit of a congested nose, but nobody seemed concerned. That's good too.

Celebrating an early Christmas at Duke,
Greg & Emma

Monday, December 6, 2004

First, thank you for all of the notes & e-mails of congratulations for our wedding. That means so much to us!

Greg, Emma, and Emma's mom, Sam, flew to North Carolina today. Emma is back at Duke for her 9 month check up. She continues to do well overall. She is walking more every time she is with us. Her tests at Duke start Tuesday morning and go through Friday, then everyone flies back, arriving in the Bay Area on Friday night.

Emma had a nasal sound when talking this weekend and began coughing a bit on Sunday. Greg contacted Dr. K who suggested upping her fluid intake. We are truly amazed at Dr. K's responsiveness via e-mail. We wonder if she sleeps! We have kept an eye on Emma to make sure there was no fever. So, I guess now is a good time to be going back to Duke.

During the stop in Phoenix on route to Raleigh-Durham, they had the opportunity to meet Jackson White's grandparents at the airport! They recognized Emma from her photos online. Jackson is from Concord, the town next to us, and is currently on the 5200 at Duke. Small world, isn't it?!?

Greg or I will keep you updated on Emma's tests. We hope that everything continues to go well.

Please check out two new pictures on the photo page. I will try to rotate some through here in the coming weeks.

Erin

Sunday, November 28, 2004 9:15 PM CST

Surprise!

We were married at our house the day after Thanksgiving!!

After being engaged for nearly 3 ¾ years, we are finally married!

Last December we had decided on a Vegas wedding and were flying to Vegas on December 30, 2003 to make the arrangements…..that was the same day we received Emma’s diagnosis. Knowing things would be different, we decided on this small family wedding, to be followed by a big reception/party to follow in 2005!

Thanksgiving was wonderful, as well as the small wedding at our home. Not surprisingly, Emma stole the show! She walked down the aisle all by herself, to start (her sisters Mallorie & Josie did an excellent job during the ceremony, too!). During the ceremony, all three girls said vows, too, and were each presented with a Swarovski necklace and engraved jewelry box. Emma started sobbing with joy; we sincerely doubt there was a dry eye in the room.

Then, during Greg’s toast after the ceremony, he took a short pause after a few sentences, at which time Emma raised her glass & said, “Cheers!” Well, needless to say, that was it for the toast!

We plan to have a reception in 2005, when all of our family can be there and Emma can be around more people. We did have 7 of our siblings there on Friday (not a small feat), but look forward to having everyone at the reception next year.

We hope that everyone had a wonderful Thanksgiving. As mentioned in our last post, we have SO much for which to be thankful!!!

(We're still working on getting a great photo together, but there is one to preview on the photo page!)

The McGregor Family (officially!)

Sunday, November 28, 2004

Surprise!

We had a wedding the day at our house the day after Thanksgiving!!

After being engaged for nearly 3 ¾ years, we are finally married!

Last December we had decided on a Vegas wedding and were flying to Vegas on December 30, 2003 to make the arrangements…..that was the same day we received Emma’s diagnosis. Knowing things would be different, we decided on this small family wedding, to be followed by a big reception/party to follow in 2005!

Thanksgiving was wonderful, as well as the small wedding at our home. Not surprisingly, Emma stole the show! She walked down the aisle all by herself, to start (her sisters Mallorie & Josie did an excellent job during the ceremony, too!). During the ceremony, all three girls said vows, too, and were each presented with a Swarovski necklace and engraved jewelry box. Emma started sobbing with joy; we sincerely doubt there was a dry eye in the room.

Then, during Greg’s toast after the ceremony, he took a short pause after a few sentences, at which time Emma raised her glass & said, “Cheers!” Well, needless to say, that was it for the toast!

We plan to have a reception in 2005, when all of our family can be there and Emma can be around more people. We did have 7 of our siblings there on Friday (not a small feat), but look forward to having everyone at the reception next year.

We hope that everyone had a wonderful Thanksgiving. As mentioned in our last post, we have SO much for which to be thankful!!!

(We're still working on getting a great photo together, but there is one to preview on the photo page!)

The McGregor Family (officially!)

Wednesday, November 24, 2004

Emma has made big strides in her ability to walk further on her own. Emma has been up and around more this past week than in prior weeks. She is really making an effort to try to walk on her own and when she does, she laughs hysterically; she is pretty excited. Emma uses her walker often and we have been working with her a lot to help her walk on her own. The weather was so nice during the end of the prior week and last weekend that we took many walks outside. Emma did great.

Emma still works on re-training her nerves and on building strength. Her OT had her standing next to the table and trying to bend down to one side to pick things up. She couldn’t quite do it, but was close. That takes a lot of different muscles. We have also been walking up and down the stairs at our house and up and down the hill we live on. (We live on the corner so there is not that much up hill to our house, but enough for a good workout for Emma, and the two basset hounds!)

Emma’s mother (Sam) moved this weekend. Erin and I are looking in the Mt. Diablo School District and placing offers on homes. We hope to keep Emma’s services that she is currently receiving and keep her sisters in the same schools with their friends. The school and district really have been great, helping Emma so much.

We have been taking more and more pictures all of the time. Pictures seem to matter more these days, as you can imagine. We will be posting up more pictures and some additional goodies on www.emmasfoundation.org at the start of the year.

Emma is doing great with her meds. Erin and I have started taking vitamin supplements and are working towards better health, so we take our supplements when Emma has her meds in the morning and night. It has turned into a fun ‘game’ for Emma.

We have been playing games, reading, doing puzzles and more. Emma is still the UNO grand champion and continues to win. She sure gets a kick out of that.

We wrapped up the week with our big Sunday dinner. Emma helped peel potatoes and helped with what she could with dinner. It is a bit stressful putting on a big production, but 20 minutes into the dinner all of us seemed to be relaxed and happy. After dinner tonight, Josie had us draw names and “regift” presents in the sprit of Christmas. The girls had fun with that for a while. Emma and the girls baked a cake and we finished the night by watching Miracle on 34th Street. There was such a warm feeling in the home today. I’ve been taking big deep breaths just soaking it in.

We look forward to a shortened week and a wonderful Thanksgiving. We are going to take some pictures this Thanksgiving of all of us. It has been a while since we have taken a family photo.

After Thanksgiving, Emma is headed to Duke for another week of tests. I would expect the tests to go well as Emma has really been doing well. From there, Emma will be back next February for her first annual set of tests. We are now looking to the future and planning Emma’s integration with her old Elementary school and friends.
We hope that everyone has a wonderful Thanksgiving. We have so much to be thankful for!

Warmest Wishes,

Greg, Erin, Mallorie, Emma and Josie

Sunday, November 14, 2004

Emma has had a couple of good weeks; nothing particularly outstanding yet nothing bad. Emma continues her many services such as OT, PT and speech at her school. Emma really looks forward to going to her school and constantly wants various friends over. She has had a few for various activities like watching a movie. Emma really is looking forward to doing more normal things.

Emma has been working on getting up and down from the couch. She will stand up and hold her walker. The OT will then have her try to put one knee down and then the other followed by putting her hands on the ground. Emma has been working on strengthening her muscles and retraining her nerves. She crawls around on the floor playing various games (usually finding something on a treasure hunt crawling around). She seems to be doing better and she sure tries hard. In fact, she often prompts herself to stand up and attempts to walk with no assistance. Emma is able to (on occasion) walk several feet on her own. If I don’t wake her up in the morning, I have found her standing by her bed ready to go. She has walked from her room to the couch one day. What is truly wonderful about Emma (and always has been) is that regardless of how small of an improvement she makes, she gets very excited and pushes herself further. I only saw her get truly discouraged once while at UCSF (going back into the hospital after getting home from Duke).

In some ways, Emma seems to be academically near the place she was last December. She can do simple addition but can’t quite figure out subtraction. She is near that now and her IEP goals have her shooting for double-digit addition and single digit subtraction by the end of the year.

As you know, Samantha (the girls’ mom) recently married and is moving. Erin and I have been looking for houses in Walnut Creek to make sure we can keep the girls in the same school and keep all of Emma’s services. The school has been fantastic and Emma has everything she needs. Wish us luck as our fist offer was met with 8 others … ouch. Bidding wars on houses are frequent here.

Whenever I ask Emma what she would like for dinner lately, it is Chinese food. It seems that first night she is here (for each transition), she wants Chinese food. She sure loves that stuff and the people at the local Chinese food restaurant always have loved Emma.

It has been a great few weeks with no big surprises. It’s been wonderful enjoying the girls and watching how wonderful they are with each other. We posted a new picture of Emma!!!!! :)

Happy in California,

Greg, Erin, Mallorie, Emma and Josie

Monday, November 1, 2004

Emma had another great week. I think she was more alert than she has been in the past 3 or 4 weeks. As an example, earlier in the week, I was sitting with Emma for the afternoon. Normally we have OT, lunch, a break and then a game or two to round out the day. However, this week, Emma and I carried on a conversation for nearly an hour. I had to stop and look at the clock to make sure I hadn’t spaced out, but that much time had truly passed. Emma asked to talk to my brother so we called him and for the first ½ minute he was convinced he was talking to Mallorie on the phone.

As you know, the school has been fantastic; Emma has all of her services covered by medical insurance and the school system. (It took a bit of pushing though…) Emma was also approved at the Regional Center of the Easy Bay (www.rceb.org ), so I think we have her services nailed down at this point. In order to choose the right path forward, it did take some experts, learning and reading a lot, working with an IEP advocate and hiring an insurance attorney, simply to get the right “information.” We are pleased with the results. We are, however, still spending hours per day working on every little charge, reconciling those EOBs that seem to come daily.

During one of Emma’s OT sessions this week, Emma was practicing getting up and down from the couch to the floor and then crawling around. She crawled around looking for plastic gift animals that she could trade in for candy. After she was tired of that, she made Halloween cookies and a special one for Daddy. (This was something worth blowing my diet on. J ) Emma continues to push herself and try harder all of the time. I am so humbled by her desire and lack of discouragement. When she makes small gains, she bursts out and cheers with “yeah!!” I do spend time talking to her about the long term and expectations so she also seems to get that these are the steps to get to the end. I think she doubted me a little during her spell at UCSF, but has been back on the game plan for a couple months now.

Emma’s nerves appear to be ‘growing’ in her legs so she has been having some foot pain. Now I could have this completely wrong, but from what Dr. Smith and her Occupational Therapist have said, this is expected. I’m not complaining one little bit. In fact, in a research report from Dr. Krivit, the leading doctor on MLD, he stated, “Proof of principle has been reported for multiple positive effects including that of the reconstruction of the central nervous system.” I am in the process of buying this report that came out last month, but believe me, some of the synopsis statements sure caught my attention. At any rate, Emma started to walk a little more normal this week (knees bending) instead of like a stiff legged giant.

Emma and her sisters went trick or treating on Sunday with their friends. YES – Dr. Smith cleared Emma to go to a Halloween party at a friend’s house (about 30 or so people – as long as no one was sick). Erin & I took Emma through the haunted house, had snacks and then we headed out trick-or-treating. Emma was dressed as Winnie the Pooh, Mallorie was dressed as a baby, and Josie as a pirate. Emma was in her wheelchair and frankly, she outlasted us. Granted, at the end of the night she wasn’t yelling, “trick or treat,” but she was still game for opening her bag for more candy. It was great for Erin and me to have all three of my girls there yesterday at a holiday special event. I can’t even begin to explain how wonderful it was to have all three sitting right in front of us enjoying a holiday. I think the girls enjoyed it just as much to be together.

We’ll post up a few new pictures from Halloween later on.

Much Love,

Greg, Erin, Mallorie, Emma and Josie

Sunday, October 24, 2004

Emma had another good week. She is making slow and steady progress, which is great. Her therapists have her crawling on the floor on all fours to strengthen her arms and legs. In fact, her OT therapist had her on all fours on the floor while drawing letters on her back and having her guess what they were. She was able to get some of the letters but not all of them. Emma was even able to get some simple words. I think the letting drawing took her attention off of the hard work she was doing with her arms. Emma also seems to be able to get up from the floor better now and sitting down.

Emma is practicing her writing, math and tracing. Her vocabulary is slowing increasing. In fact, when Erin asked her what she was doing one day Emma responded with “nothing in particular”. Emma doesn’t seem as shaky as she has been in the past and is now practicing cutting with scissors and other coordination activities. Her medications are reducing which helps a lot as well. Emma is a fantastic sport and she sure tries hard. She is game for all her activities and really tries hard.

With any luck, Emma will start speech at Walnut Acres soon. Her school is actually setting up a video system so that she can be with her classmates on occasion. Thank you to the school for helping with all of her services and more.

Much love,

Greg, Erin, Mallorie, Emma and Josie

Monday, October 18, 2004 11:55 AM CDT

Emma had a nice, full week. She continued with her homebound teacher, OT (times 2), Speech, and PT therapists during the week. She is still trying to learn to tie her shoes and figure out shapes with her hands without looking. She works on getting from the couch to the ground (sitting) with OT and PT. She also works on getting to her walker and around the house. Her academic teacher is working with her on single digit addition and she struggles with single digit subtraction. She is reading at about a second grade level (who knew?). This is awesome.

There was an IEP this week at the school which merged all of her services into this meeting, as our annual meeting. It is a pleasure to say that the school and district are really working with us for Emma. Emma will continue to have her homebound teacher 4 days/week (75 minutes a session), her OT 2x per week at 45 minutes per session AND ... she will have speech at Walnut Acres Elementary! (The times are when no other children are in the resource center.) This will be so neat for Emma. The school is also setting up a video conference system so that once a week Emma can "sit" in on classes or activities. Wonderful...

Emma seems happy and to be doing well. She still loves to play the board games during the week, especially UNO. Another new surprise is that she is starting to like to read again. She really liked reading pre-transplant and she is starting to again. Each week there are more and more signs of the "old" Emma. She is still sweet and diligent. All of her therapists and teachers have commented on how hard she tries and what a great girl she is.

We look forward to more progress and good things for Emma this week.

Greg, Erin, Mallorie, Emma and Josie

Sunday, October 10, 2004 11:21 PM CDT

We enjoyed a wonderful weekend with Emma. On Friday, Emma requested Chinese food, which she seems to do a lot while she's here! Throughout the weekend, Emma asked about Trevor and why he died. We tried to keep it as simple as possible saying that, “Trevor’s body didn’t like his new cells.” From a discussion with her mother earlier in the week, Emma knew that Trevor was with God now, and his brother Ross, in heaven. After dinner on Friday, Erin and Emma were the only two left at the table. Emma asked Erin about Trevor. After discussing Trevor for a while, Emma said, “I’m glad I’m alive.” We are too, Emma....We are too..... We continue to pray for the Joiners, as they have suffered so much. Their situation has also made us realize how fortunate we have been, in so many ways.

Emma’s mobility has improved. She gets around well with her walker. With assistance close-by, she will also walk a number of steps unattended. On the car ride home on Friday afternoon, she was easily reading Josie’s first-grade books. This, too, is a huge improvement, since the transplant. She continues to get her homebound schooling, speech therapy, occupational therapy, and physical therapy at her mother’s house throughout the week. All of the therapies have helped her continual progress.

Emma is taking fewer medications, and of those medications she is taking, most of them are lesser amounts. However, taking medications in the morning and night is still not an enjoyable process. We found a way to make it a little more interesting & distracting for her. After seeing a specialist recently, Erin and I found we were both lacking in a number of vitamins, minerals, trace elements, etc. So, we have been taking a number of vitamin supplements including simple things such as vitamin C and E to more complex supplements to try to regain our adrenal functions, which regulate things like cortisol (the stress hormone; Mine was low, while Erin’s was exhausted). So, we go around the table taking turns taking medications or vitamins & let Emma choose which ones we’ll take that round. It is a distraction, if nothing else, and helps to get her medications down much easier. Hey...whatever works!!

Today, we had a wonderful family dinner for the five of us...including pot roast, mashed potatoes, and everything! The family time together is truly magnificent. We always look forward to our time together with all five of us.

Greg, Erin, & the Girls

Monday, October 4, 2004 10:45PM PST

It is with great sadness that we mention the passing of Emma's wonderful friend she met at Duke, Trevor. Please keep the Joiners in your thoughts and prayers as they have lost both their sons in the last eight months. Their pain is simply unimaginable.

Very sad in California~
Greg, Erin, Emma, Mallorie & Josie

Sunday, October 3, 2004

Emma had another good week this week. She didn't seem as alert as she has been in the past few weeks. The alertness could be due to her having so many services during the week and being tired but it's probably just me watching her every little action with anticipation.

Emma is using her walker better than she was last week. She is nearly able to get up on her own and get to her walker. (The walker sits next to her chair.) That is a big improvement from last week.

She is receiving all her needed services through medical coverage. The PPO has approved Emma for visits by all her therapists through the end of the year. That is a relief. I am still working on the school to provide speech for Emma. We have Emma's annual IEP in about ten days so I'll push for speech then.

Emma was learning to tie shoes and figure out shapes by feeling them blindfolded during OT this week. It will take some time and more work but she'll get there. Emma was unable to tie her own shoes even before being diagnosed with MLD. As soon as Emma is able to tie her shoes, she'll have an improvement to hang her hat on.

Emma had a visit from her Aunt Carolyn from Grand Cayman this week and she really liked that. After a big hug and settling down, Emma sang Carolyn a song from Neil Diamond -- “Sweet Caroline”. Emma has always been able to remember the entire first verse of that song and then some. I've heard the song a million times and couldn't repeat the first verse.

Emma's medical invoices, matched against EOBs and then reconciled between two health plans continues to be a daily battle. I would estimate about 3-4 hours per day of work. Ug...

Emma's hair is coming in slowly and she is starting to look more like she did before the transplant. She seems pretty happy and not quite as moody as she has in the past. (Her steroid levels are being dropped and hopefully will be gone soon. The steroids were making her moody.)

Much Love,

Greg, Erin, Mallorie, Emma & Josie

Sunday, September 26, 2004

Emma had another productive week. She was out walking with her walker, playing games and working with her therapists. Emma's Occupational Therapist had her playing a little soccer and basketball. (Granted this is nothing like before, even at Duke. She still can't stand on her own.)

I spoke to an legal advocate for Emma regarding services for her. The advocate believes we should be able to add speech, so I am happy about that.

Emma is getting more exited about playing games. She has really been enjoying playing the game Sorry lately. She has been back into the game and she has started to "trash talk" about winning.

Emma's weekly appointments went well. She had a kidney test that came back pretty out of whack on Tuesday but was repeated and found to be fine. Her Orapred has decreased and her oral meds are slowly disappearing. Yeah....

So far so good.

Much love,

Greg, Erin, Mallorie, Emma and Josie

Sunday, September 19, 2004

Emma had a really great week. She continued to improve from last week. Emma was up and pushing her wheelchair and even walking about 10 feet or so on her own. :) She really continues to do better all of the time.

Emma received her new glasses this week for her cateracts and is pretty happy about wearing them. Emma also recevied her walker this week and starting with that. She has been asking about both of these daily; multiple times per day....

Emma continues to be the UNO champion. She continues to beat me, Erin and even her OT therapist. My goodness she has good luck.

Samantha and I met with the IEP team and Walnut Acres regarding services for Emma. The school is willing to provide her teacher 5 days a week and OT 2x per week for 45 minute sessions. The district declined PT and speech for grounds I didn't understand. They will provide speech if Emma can go to the school. Dr. K approved Emma going to the school as long as it is individual work alone. The school was going to check with the speech teacher to let us know. I have a meeting with an advocate external to the district to better understand the school's responsibilities. I'll let you know how that goes.

All is going well.

Much love,

Greg, Erin, Mallorie, Emma & Josie

Sunday, September 12, 2004

It has been a busy week for everyone, especially since school started for Mallorie and Josie. Emma has a new teacher from the district for her homebound schooling and an OT therapist from the district. Emma also has a PT therapist provide through medical insurance and an additional OT therapist. We are still missing a speech therapist. One would think this is all great, however the district let us know this week that they would no longer provide any services other than the teacher. Excuse me !?! Emma already has an IEP that includes OT, resource and speech, yet the district wants to drop all of these. Needless to say, we have an IEP setup for this Thursday. The district's stance is that our medical plan should cover all of these first, then the district. My big question is why the district would change their stance on Emma's disabilities when she has had medical coverage all along? Hmm...

Emma's PT therapist, Pam, was helping Emma this week with getting ready to use a walker. Yipee. (You can see a photo of this on the photo page.) Emma was practicing walking by pushing her wheelchair a few blocks at a time. She has been doing throughout this weekend and today walked from the couch to the front room with no help. I am so happy. Pam said that Emma is doing things this week that she couldn't have hoped to three weeks ago. :)

Emma remains the Harry Potter UNO grand champion. If you don't remember, Emma was the UNO champ while in her unit at Duke; she continues to dominate. The best part is that a few months ago, she couldn't really understand how to play anymore and now she is back.

Emma continues to ask about Trevor and she has seen pictures of him riding his horse. If you are reading this Trevor, Emma says, “Hi”. Emma also started talking about basketball from her Duke days and wants to see Thunder. Thunder is the mascot for the Golden State Warriors basketball team. Last year we took Emma to several games and she really enjoyed them. I told her she can go next year. As we were talking with Emma about basketball, we must have spurred something, as Chris and Tim (Emma's uncles) decided to play one on one on our court in the backyard. Emma had fun watching them and cheering. (They were both worn out within 2 minutes. Age...)

Emma's medications are going easier these days but they are still no easy ride. Emma has more tablets to swallow and that seems much easier than the liquids, which seem to taste so badly.

Emma is scheduled for her 9 month checkup at Duke in early November for another round of tests. I am excited to go and see how she continues to test. Speaking of going to Duke, another family, located just a few miles from us, has a 17 month old who was recently (originally) diagnosed with MLD. They have had a real roller-coaster ride and after using Dr. Wenger's lab, they found out just a couple days ago that their son really has Krabbe. It turns out they are headed to Duke to undergo tests to see if a stem cell transplant will help him as well. Please say prayers for Jackson.

Emma continues to be the sweetest little girl. We spent some more time talking about MLD and that she didn't have it anymore. We also talked about her medications and her future. Her two sisters were in the room and Emma said, “I am so happy Mallorie and Josie didn't have MLD and have go through this”. This is the same thing she said within 5 minutes of us telling her of her MLD diagnosis, before we knew there was hope.

The only other thing that seems to be a daily chore is keeping track of all of the medical billing invoices and Insurance EOBs (Explanation of Benefits). Luckily, with Erin's accounting background, she is able to track most of these. Sam and I have been very fortunate that our respective fiances have been able to help us out so much during these challenging times. As Drew is a Pediatrician, he has been extremely helpful throughout. Erin has been very helpful on the administrative end. I think things are finally (after months) at least on track in that area.

Erin and I have enjoyed a great weekend here with all three girls. We love having Mallorie and Josie with us here half of the time, but it is even more special when Emma is here, too. :)

Love

Greg, Erin, Mallorie, Emma & Josie

Thursday, September 2, 2004

Another update today ---

Emma has completed all of her tests and Dr. K has reviewed them. It seems that Emma has stabalized and is doing as expected from Dr. K's viewpoint. The only bigger thing that came up was that Emma has cataracts and needs glasses. Dr. K wasn't too worried and felt if it worsens over time that Emma would have surgery to repair that as well. (There also appears to be a little more nerve damage in her legs from MLD.)

Having this checkup was a bit of a relief I must say. Emma is due to go Back the first/second week of November for another week of tests. Those tests will slow down after a year and eventually be every 2 yrs (?).

I'm very pleased. More details to come...

Happy and Thankful,

Greg, Erin & Girls

Thursday, September 2, 2004

Emma had another full day of tests yesterday all starting by getting up at 6a.m. Emma is pretty tired to say the least. They are a lot of the same tests that were done when Emma was being considered as a transplant candidate.

Emma had her eye exam and was found to have cataracts. On a scale of 1 to 4 she is a 2. Whatever that means. Anyway, this is due to the long term steriod use; a side effect. Emma was pretty happy about getting glasses. They tint outside and lighten up inside. Dr. K should go over more what this menas today. From what I understand it means that she'll need surgery a few years out when she is well enough to add another thing to tune up list. I was a little disappointed and worried about this since she didn't have cataracts last May and now she does.

I'm also curious to learn more about her MRI, nerve and other studies. Dr. K also ordered an X-ray of Emma's left hip to see what is going on there. She has a lot of nerve damage in her legs but something else is going on when she tries to walk. Once Dr. K has had a chance to digest the information and get it to us, I'll update.

In general, it appears as though things are going well alough we are being hit with some of the drug side effects. I guess I still can't complain too much.

- Greg, Erin & Girls

Wednesday, September 1, 2004

Emma has spent the past couple of days running around the Duke hospitals (north, south, children's etc) with tests. The first day Emma was pretty upset about being at Duke not really knowing what to expect. She cried. The second day was better but very long. She has had a variety of tests from swallowing to the behavioral again.

She hasn't had any additional fevers and so far things are looking well.

Greg, Erin & Girls

Thursday, August 26, 2004

Emma's temperature has been fine the past 2 days but she still has a little runny nose and is a little more tired and out of it than normal. She still has her PT, OT, teacher and so on coming each day.

Emma isn't eating as much (very little) but then again it's hard to say if she is going back to 'normal' or having eating issues. My hunch is that she is going more back to normal. We'll see. Dr. K has added in a swalling study when she is back in North Carolina next week.

I hope that Emma's tests go well next week and that she doesn't have to stay or check in to the hospital for any reason; she shouldn't though.

Greg, Erin & Girls

PS - Emma is not taking meds well at all anymore! It is hard and even today when Sam gave her meds she threw them up. Yuck.

Monday, August 23, 2004

Emma is doing well and continuing services for school, PT, OT etc... She has lost more facial hair this week and her hair is growing in even more.

Emma did well over the weekend but was a little less than normal. Emma had her weekly Dr. Smith checkup and was found to be running a low grade fever. Not what we wanted to hear. Her steriods were increased and she was given a shot. Within a few hours she was registering a normal temperature. So far so good. I hope it was just a bump. Emma is due to be at Duke next week for a full week of tests with Dr. K. Hopefully nothing will come of this little fever and we won't need to check her back in when at Duke. UG...

Anyway, other than that she really is doing well and is doing better every week.

Thank you all for your continued support.

Greg, Erin & Girls

Tuesday, August 17, 2004

Emma had her weekly visit with Dr. Smith. Everything seems normal with the exception that her heart rate is pretty high. I guess it is normal for the children with transplant to have high heart rates but Emma's was a little higher than that. (145) Dr. K and Dr. Smith didn't seem concerned and Dr. K will do an eco at the end of the month when Emma is at Duke for her check up.

Greg, Erin and Girls

Sunday, August 15, 2004 10:34 PM CDT

Well – I haven’t updated Emma’s site regularly and I’ve finally decided that it has been due to superstition. I was never superstitious but after the last several months I’ve noticed that it creeps in from time to time. I told myself that I was going to update Emma’s journal more regularly and soon after that, Emma had Gall bladder issues. Okay – I’m over that now. I’ll update more regularly.

Emma has been doing well and making steady improvements over the last few weeks. Her teacher and other specialists have all commented on seeing improvements in Emma. Emma is more alert and she is headed in the right direction. She still isn’t walking on her own but will get up from the couch and stand up on her own. She seems mentally quicker and is now doing basic math (1+1, 2+2 etc) and basic word recognition. A few months ago Emma wasn’t recognizing her letters or numbers, let alone words. Mallorie was away at camp for a week, arriving home Saturday night, and in that short time, she even noticed positive changes in Emma.

This weekend, Erin’s parents came in from out of state to see Emma. Emma was so excited to see them; her excitement almost brought Erin & I to tears. (Also - Cindy & Mike had the opportunity in the last week to have dinner with Jane Trimper’s parents in Lake Tahoe!) Gramma Cindy, Grandpa Mike, Emma and I played a game of ‘Sorry’ (amongst others). Emma was able to recognize the numbers, pick up the pieces herself and count the spaces during her move. Halfway during the game, Emma had one piece left at start when she picked up the number 7 and didn’t show us. She began to read the card and said, “Move from start or pick up 7 more cards”. I think we all had to do a double take. Emma read the card the same way again. The “7” card doesn’t say that at all, if you have played ‘Sorry’. Clearly we’ve moved past knowing what the letter ‘a’ is and occasional yes and no answers to questions.

Now – medications are a whole other matter. Emma really resists taking her medications more and more all of the time; it is a constant battle to figure out how to get her to take them. Erin’s mom helped by offering to do somersaults after three medications that Emma took on Friday night (we’ll try just about everything these days!) Emma just started a new medication, a stool softener, which she noted was pretty nasty.

I am still pretty ‘emotionally’ wound tight because we have several months to go before we’ll hear that Emma can go back to school and is transitioning to normal activities.

Greg (& Erin & Girls)

Sunday, August 8, 2004

Things have continued to go well for Emma this week. Her med levels (specifically the Cyclosporine) are all in good ranges. Emma continues to have her services and we're getting ready for an IEP to try to get Emma setup from the school in September.

Emma still requires constant care for every little thing but she is getting better here and there. Her ability to walk with assitance is getting better (more stable) and she is starting to blurt out verbally. She makes efforts to be verbally engaged with us all and that is perfect. These are all good signs that the cells are starting to do the 'right' things.

I'll update some more recent pictures over the next few days.

- Greg, Erin & the girls

Sunday, August 1, 2004

Emma continues to do well this week. She hasn't had any problems or issues. After the past several months, this is really great but it is stressful worrying about if there are more bumps in the road tomorrow.

Dr. Smith was able to assist in getting us PT and Speech for Emma through medical coverage and with a program to help pay all of the co-pays for Emma's services. So far things are going well in that arena. Erin has been slicing and dicing all of the medical bills and continues to stay on top of all of those things. That's a big help.

Emma now has her teacher, PT, OT and Speech therapists coming to her throughout the week. That is a great step and with her being stable the past few weeks I hope we're on a continued path to improvement.

Emma remains very positive and is very happy when she makes small gains. As an example, she gets so excited when she can go from the sitting position to standing (leaning on the couch of course) by herself. She recognizes little improvements and they seem to motivate her. She is also not relying on pull-ups all the time now.

Emma's medications are slowly being decreased which is also encouraging. Tomorrow is Dr. Smith day and more blood tests so we'll see where we are at and I'll update.

We are hopeful that things will stay steady and in a positive direction for Emma. :)

- Greg, Erin & the girls

PS - Please keep the Trimpers in mind as they go through another "bump" in the road.

Saturday, July 24, 2004

It's been a pretty basic week for Emma. She has had her teacher and OT therapist come all week. Her meds are going well but her Cyclosporine is high again. (We've reduced that) We are still working on PT and speech for Emma.

Her sisters are just great with her and really help. Emma seems to be happy. Her uncle Tim came last night and she was just jumpin for joy. (She tried to jump and run but can't quite walk right now) She has a lot of smiles (except when it is meds time)

Last night I went into Emma's room to check on her. She was awake at about 5am so we started talking for about a 1/2 hour before she went back to sleep. She spent a lot of time wondering how all her friends and family were doing. She can't wait to get to a point to be out playing again and to see everyone - she had a big smile the whole time.

We have a slow weekend ahead but are talking about getting a small nerf basketball setup similar to what she had at Duke to see if she can still make a basket.

I'm hoping that it isn't me projecting my hopes but she does seem to be getting slightly better and able to communicate better.

- Greg, Erin, Mallorie, Josie and Emma

Monday, July 19, 2004

We don't have any sicks kids and Emma is doing well. Emma has her school teacher come 3x per week and her OT therapist 2x per weeks so those services are going well. We're still working on PT and speech servcies.

Emma had more tests at John Muir today (including her breathing treatment) and a check up by Dr. Smith. She was in a hurry to get out of there today because she said she had a date with Trevor tonight and needed to get going. She still thinks of Trevor often.

Everything seems to be in order. Emma is losing some of that facial hair and has more hair coming in on top of her head. She is happy about that.

Emma went swimming this weekend. One of her mom's friends private pool and Emma enjoyed that; although she complained it was a cold. (The pool was 95) Erin and I took Mallorie and Josie to Fisherman's Wharf on Sunday. We finally had a break to do some fun things with them.

We have had some uneventul days - just tests, treatments, school etc... (The good stuff)

- Greg, Erin & the girls

Wednesday, July 14, 2004

Things have been going well for Emma the past few days. She has her school teacher coming to the house and her OT therapist. She is bright-eyed in the morning and ready for bed in the evenings. Emma actually has some hair coming in on the top of her head now and some of the facial hair is starting to leave.

Josie woke up this morning very sick so that was a little nerve racking. Josie and Emma are seperated now. (There's a benefit to having a divorced house going through this) Josie's cousin has strep but Josie tested negative for that today. (Yes - a Doctors visit without Emma) We'll just wait and see how Emma does now.

It truely is amazing. There is just so much going on all of the time and the least little thing such as Josie being sick throws more into it all. It's been good that Emma has had almost a week of a normal routine and normal routine as an outpatient. That's very nice.

I'll have to get some more pictures as she is start to slowly (I mean slowly) change.

- Greg, Erin & Girls

Monday, July 12, 2004

Things went smoothly for about 24 hours. Emma was released on her Birthday July 3rd but was back at the local hosptial (John Muir) on the afternoon of July 4th with more or the same issues. She spent until 4am on the 5th waiting in the ER area and then she was told that she had to go to UCSF right then to check in. Eventually the doctor's their agreed to allow Emma to go home but that she had to be at UCSF at 9am on the 5th. (Yeah - 4 hours later). Anyway, Emma checked into UCSF around lunch on the 5th for what was to be the entire week. After the first few days it was learned that Emma was empacted (sp?) from the surgery. She eventually went to the bathroom and with more fluids (IV) she seemd much more normal. She was allows to leave earlier than friday and everything has been going well since. She has her appt with Dr. Smith out here at 10am so we'll hope that she continues to do very well.

Emma also starts her at home teacher today and her OT services all throught the school. We're working on her speech and PT services through medical insurance.

- Greg, Erin & Girls

Saturday, July 3, 2004

It is EMMA's birthday today!!!! Emma turned 9 today AND was released from UCSF medical center as a great birthday present. Yeah!!!

The past days have not been fun. Emma continued to throw up and was just not herself at all. After getting her meds to the right levels she continued to do badly. A further test (which I can't pronounce or spell) was done and found that her Gall Bladder did need to come out. It was expected to be taken out next week but a thursday morning a call came in and UCSF said come down by noon.

Emma saw dozens of different doctors as I am sure they were all very curious to see an MLD patient. (UCSF has not yet treated an MLD patient.) In fact, the surgical team sat and read her medical summary and one of the doctors kept saying "amazing..." Anyway, Emma and I didn't sleep well the first night as we weren't used to all of the nurses coming in and out. By 7am Emma was in the pre-op room ready to go. She was pretty upset about having the operation but was ready to get through it by 7am. The doctors were able to due the while procedure laprscopicly. (spelling?) She was out by 11am but slept the entire day. Her stomach hurt pretty badly but she was able to take pain medication and eat a 1/2 of a cup of noodles without throwing up so that was good.

Emma slept better last night and had a smile on her face this morning as she realized it was her birthday. The only sad part was that she kept saying to me that she would never get better or get out of the hospital. When she spoke with my sister Carolyn on the phone she just cried. Anyway, she had a great birthday present from Dr. Horn. Dr. Horn told Emma it was ok to go home. Well - for the next hour Emma was pulling to get out of there and demanding to leave. Good for her.

She looks good today and the Emma of a few weeks ago seems to be starting to re-appear. That is great!

We're signing off for a few days to just settle and rest. Emma is at home and will start the follow up as an out patient on Monday.

- Greg

PS - I promised her cheese pizza with olives on top so we're headed to pick up pizza!

Friday, July 2, 2004 6:35 PM PST

Emma made it through the gall bladder sugery just fine! They were able to do it using laproscopic surgery, which is good, thereby giving her smaller areas that would potentially be open to infection. After coming out, the doctors agreed that the gall bladder was definitely diseased. So, it's good it came out.

Unfortunately, Emma's spirits aren't very good as today is the worst she has felt in the last six months. She tells Greg that she is never going to get out of the hospital & is never going to get better. Obviously, Greg is extremely optimistic and shows that to her. She is just frustrated right now. Greg is geared up for staying another night in the hospital with Emma. The doctors have mentioned possibly letting Emma out of the hospital tomorrow, but it sounds like it will more likely be Sunday or Monday.

As mentioned in the post earlier today, it is Emma's birthday tomorrow. Hopefully her spirits will be better tomorrow.

Keeping the faith~
Erin

Friday, July 2, 2004 9:00 AM PST

Emma is in her surgery right now. The doctors recently came out to say that everything is going o.k. She should be done within the hour, with some recovery time after the anesthesia.

Greg spent the night at UCSF Children's Hospital with Emma last night, and will again tonight. Then Sam will be staying the night with her the next two nights. With no complications, she is expected to be out of the hospital on Monday. (She is really looking forward to that! Each day she asks, "Is today the day?" They have a calendar on the wall in her room, so she is counting the days until her 'release'!)

Tomorrow is Emma's birthday! I have heard from others that they try to make a child's birthday pretty special if they have to spend it in the hospital. Hopefully that is true at UCSF, too!

Erin

Thursday, July 1, 2004

One thing I've learned is that things can change quickly. Emma is headed to UCSF to check in within the hour to have her Gall Bladder out tomorrow morning. No emergency but rather an opening in the OR. Dr. K says take it out and the sooner the better...

I'll update tomorrow on her progress.

- Greg

Wednesday, June 30, 2004

After the tests yesterday, Emma's Gall Bladder has shutdown and is not functioning due to the MLD. Emma was at UCSF today to meet with the surgeons. We met with the surgical team today to discuss Emma's options. It turned out to be more complex than I thought. I thought that the operation would be trivial but with her recent BMT/Stem cell transplant and condition, she has risks. That was hard to hear and weigh. At first, the staff seemed to feel that waiting and changing her diet would be best. However, after spending time with Emma and discussing options, they saw that she needed it out. (I think the near dozen times she threw up in the office helped show the reality of what she was feeling) Dr. K wants her Gall Bladder out so that is what we will do.

There were no OR times this week so she'll have it out next week. There is a 1/3ish chance she'll end up in the PICU (pediatric ICU) so I am stressed. (I like numbers and I can't seem to get any doctor to quote me exact figures... oh well) Anyway, she hasn't been herself at all this last week so I'm hoping this will help. She is expected to be in the hospital for about 5 days (with no problems). Another concern is that the last weekend we were in the hosptial Emma was down because she didn't think she would ever get out.

Wishing Emma could spend time simply recovering,

- The McGregors

Tuesday, June 29, 2004

After tests today, it would seem that Emma does need her Gall Bladder out. It has gone back and forth but the tests today should conclude that she needs it out. Emma was also sick and throwing up today most likely because of her Gall Bladder. Emma is getting ready tonight to head to UCSF tomorrow. She will be looked at by the surgical team and the will review the tests. Dr. Smith (her oncologist out here) was pushing today to try to get the team at UCSF to schedule her to have her Gall Bladder out this week (checking in tomorrow) so things don't become problematic for her.

Dr. K's response is still consistent, take it out.

I just want to get in there and have the operation and get it out quickly. When Emma checked in over the weekend she was really down thinking that she was going to stay for a long time again. I just want to normalize things for her so she can focus on the future and getting better. :)

- Greg, Erin & kids

Tuesday, June 29, 2004

Emma had more blood tests today and saw Dr. Smith. She has more tests scheduled for 7am tomorrow followed by a meeting with the surgical team at UCSF wed. I guess with a week long of appointments the "team" will be able to figure out whether or not to take out her gall bladder.

Emma was doing really well today. She was very alert and had only a little stomach pain. Very encouraging.

Tomorrow will start to tell us more.

- Greg, Erin & Kids

Sunday, June 27, 2004

I completely forgot out bad it sucks to be in the hospital. Emma was admitted to a air filtered room at UCSF friday due to her throwing up, incoherence and so forth. We thought it was her gall bladder which it still could be. However, she had toxic levels of cyclosporine which wasn't good and could have created all of those symptoms. Anyway, with all the steroids Emma is so hungry but they wouldn't let her eat until evening. By the time evening hit and she could eat, she ate far more than I could eat that night and was still hungry. The good news was the she didn't throw up her dinner. (A little bit that didn't count)

Her evening meds were late so she didn't make it to sleep until 10pm and with the alarms going off at night, being in a new enviornment we both didn't sleep much at all. At 4 am she said her stomach hurt pretty bad. However, as I was checking her out I found that her 'PORT ADAPTOR' was out and the needle was poking her in her side. Her port is like a central line but under her skin. The idea is if they need access they numb the area and insert a 3/4 inch needle to gain access directly. Since it fell out they had to insert a new one quickly and let me tell you, that does not look pleasant. Emma cried a bunch and held my hands. Not fun.

About 30 minutes after that and until they brought breakfast all Emma talked about was food and specifically Red Lobster. When they finally brought breakfast, it wasn't what we ordered the night before and she didn't like it. I had make sure lunch was right and when it came she ate litterally every little thing on the tray and was still asking for food.

Since she ate a lot and didn't have a Gall Bladder episode so since the cyclospronine level was now low, they released Emma and she is home now. I must say that when she checked in she was really down and telling me that she would never leave and be able to go home. When the doctor said she could go she cheered and was really happy. I don't blame her. I forgot how uncomfortable the hospital really was.

Emma has to go back in the morning to the local hospital (John Muir) for a check up with Dr. Smith and to see if a CT scan is needed for her Gall Bladder. I guess we'll monitor everything this coming week and have a 2-3 hospital days to sort stuff out.

I'll update when I know more tomorrow/tuesday.

- The McGregors

Friday, June 25, 2004 9:38 PM CDT

Greg is with Emma at UCSF right now. It appears as if her cyclosporine levels were quite high, almost to a toxic level. (Cyclosporine is one of the many medications that Emma is taking morning & night). They are trying to get her levels normalized, then she will likely be released tomorrow. It sounds like she will be back on Monday for a CT scan of the gall bladder to see if/when they need to proceed with its removal. After getting some fluids, she seemed to be doing better today. As usual, Emma is being quite a trooper!!

:)

Erin

Friday, June 25, 2004

After another day at the hospital and some more tests it turns out that Emma appears to need to have her gal bladder removed. She is in some pain now and is probably 1/2 as coherent as she was two days ago. (Better than yesterday as she was nearly completely out of it for a while) She is continuing to throw up and Dr. K wants to have UCSF remove her gal bladder before it becomes problematic for Emma.

It is hard seeing her not feeling well at all and being so out of it. Just last week she was so much better. (Not great or anywhere near normal but better)

It looks like we will push to have Emma admitted to the Bone Marrow Transplant unit at UCSF next week to have the procedure done. I guess she'll be in there a few days or so. I'm just anxious to get her in sooner rather than later so we don't risk other complications.

Also, Dr. K said that if she can't seem to keep things down that she'll have to go to the hospital again tomorrow for IVs and the like.

Axiously waiting to have procedure at UCSF,

- The McGregors

Thursday, June 24, 2004

Emma had one of her first hard days since being back home yesterday. It was a rather full day. She started out feeling fine in the morning and in a matter of about an hour (around noon) she became nearly incoherent. She wasn't able to focus on me when I would talk with her and about the only thing she could say when I asked how she felt was 'bad' or 'stomach'. Soon after that she began to throw up.

She went to the hospital to see Dr. Smith right away and spent the rest of the day there with tests, getting fluids and so forth. She nearly was admitted but was able to go home and go back first thing this morning. She'll head in shortly for some ultrasound tests and so forth. Dr. K's thoughts are that Emma may need her Gal bladder out. I guess many of the patients eventually need their gal bladder out. I guess the chemo and medications 'blow' it out so to speak.

It was a pretty stressful day for me and I was pretty emotional.

Samantha and I met with the school earlier in the day when things were calmer and it appears as though they will do OT and the Academics through July and August which is good. However, the other services they won't do so we'll have to go through the medical system. Luckily the insurances we do have should cover most of that.

I'll post again later tonight or in the morning when I know more about the test results and have talked to Dr. K.

- The McGregors

Tuesday, June 22, 2004

Emma is starting to settle in now. She seems very happy to be around friends and family. She has been spending some time with various family members and friends and seems to really enjoy seeing them. She always has a big smile when she sees someone she hasn't seen in a while.

There is a lot to do and still a lot to plan out for her. We are still working on getting Emma her school services and everything else she needs. We have another meeting tomorrow with the district to try to make that happen.

- The McGregors

Thursday, June 17, 2004

Emma sat outside under a shady tree in a nice comfy chair today and watched her sisters ride bikes up and down the street. She really seems to enjoy them. It also seems as though Emma realizes that she should start to recover with time.

Tomorrow looks more of the same for Emma. Her next doctor's visit isn't until friday.

- The McGregors

Tuesday, June 15, 2004

Emma is back at home and has been enjoying seeing friends and family she hasn't seen in a 1/2 of a year. She continues to take her medications and doesn't quite look like the same Emma. That will change when the medications lower. (We posted a recent picture of her on the site)

She still has a great attitude. Emma's uncle Tim came to visit her today and she was pretty happy to see him. They have always had a great connection.

Emma looked at me today, gave me her famous thumbs up (which meant she was kicking butt) and said - "daddy - you took good care of me and were there every day. Thank you" I've been crying ever since. My goodness.

We've been working with the school to have in home services for PT, OT, Speech and Academics and are still pushing to get those throughout the summer. This is turning out to be a challenge.

Emma's spirits seem much better at home. :)

- The McGregors

Monday, June 14, 2004

Ok Ok she wasn't on the plane for 3 days since the last update... Sorry for the delay but this weekend has just been a little busy.

Emma made it back safely and was so happy to be back here. She went to Sam's house this weekend and has had a lot of visitors and a million more that are waiting to see her in due time.

She is happy to see her dogs play, just be around all of her family and has a smile on her face often. It feels like with each person she sees that has been at home and part of her life the more she seems to realize she is home. She was teary eyed to see Erin, kept asking for her Monica (a friend) and I'm sure seeing Drew's kids makes a difference. I have some new pictures that I'll post soon as she continues to change due to the steriods and medications.

Erin graduated from graduate school this weekend and when I asked Emma if she remembers Erin studying all of the time and was now done she said - 'yeah....'. She is still just so cute. She had some visitors and Drew and his kids came over Sunday night to have dinner with Emma and her sisters.

I asked Emma how it felt to be home and to have kicked MLD in the butt. She said good but was worried it when MLD would come back and she would have to do this again. I said it won't and had to tell her a few times. I think when she got it she had a few tears in her eyes. She has been used to many leukemia patients where before a transplant the battle is to keep the leukemia in remission.

Now we start to figure out the next year or more of recovery and how to accomodate her.

:)

The McGregors

Friday, June 11, 2004

Emma is on the jet headed for California!

:)

We are all so very emotional and so happy.

Greg, Erin, Mallorie & Josie

Thursday, June 10, 2004

Emma underwent some ultrasound tests and further blood tests today. It isn't clear what happened but her liver function is headed back to normal levels. She may have simply had food poisoning. (We found out that Emma had some liver tests comeback not normal. The throwing up could have been drug interaction related, being on the medications a long time, food poisoning and more)

Emma sure wants to go home. She has really been through a lot the past six months.

Dr. K will check Emma tomorrow. If things are stablized, she may let her go tomorrow. Her grandpa has arranged a private jet to bring her directly to Livermore. They have been great and are still waiting at the airport.

Missing Emma so much,

Greg, Erin, Mallorie and Josie

Wednesday, June 9, 2004

Emma's clinic went well yesterday. Emma's plane is at the airport to take her home right now. However, as luck would have it, Emma began throwing up litterally as they were headed to the car. Needless to say, Emma is back in clinic right now and her trip home has been postponed. We don't have an idea if she'll be postponed a day or a week. What I do know is that they haven't found any infections or other issues but have put her on antibiotics just in case.

:(

When I learn more, I'll post again.

Wishing Emma was home,

Greg

Tuesday, June 8, 2004

Emma is still doing well over all. Some of the issues I wrote about before appear to be MLD related. We spent some time with Dr. Kurtzberg today and it would seem that some of the issues I thought were transplant related are probably MLD related. E.g. Emma taking several seconds to respond to a questions at times. The good news is that Dr. K feels that much of these things should be regained by Emma over the next 2 years simply due to the umbilical cord stem cell transplant. I must say that Dr. K is very encouraging.

Emma is still targetted to come home on the 9th and it would appear as though we have some work to do to figure out her schedule. Emma spends the day tomorrow with Dr. K and if all goes well she will be given clearence to head to California.

Dr. K has also mentioned that there are other opportunities for funding additional research at Duke to assist with MLD and forms of Luekodystrophy. (Emma) When I get those details, I'll get in touch with many of you.

Please keep those prayers coming. Emma has a lot of recovery and work to do. She is not the same Emma as last December but we have much hope.

Greg

Thursday, June 3, 2004

Emma had her central lines taken out today and a port put in. She did real well and has been pretty tired today. She also is pretty emotional like she was when she first had them put in. (Due to the medications given during surgery etc)

Dr. K has Emma still scheduled to leave June 9th (next wed) to come home. I am so happy.

Greg

Friday, May 28, 2004

Dr. K has modified Emma's medications and now she isn't throwing up like before. That is good. She is still targetted to come home on June 8th. (Yeah)

It appears as though most of her issues like reading, strength and other declines are likely related to the transplant and not MLD but we won't know for sure for a while. Please keep praying for her over this next year.

Emma had her last day of school today with Miss Trish so they had a special time at the gardens.

Shrek 2 is out and Emma is going to go to the drive in to see the movie with her mom and grandma. She is so excited and happy about seeing Shrek 2.

Greg

Tuesday, May 25, 2004

The transplant is going well and things are progressing as expected. Emma is getting very weak from the medications and the transplant. She has lost some skills such as reading and the ability to recognize letters, numbers and so forth. The doctors say that this can be medication and transplant related as well as further MLD progression. Emma starting throwing up last night and today. Dr. K thinks this might be due to the medication changes so we'll see. (This can happen with she is slowly taken off various medications)

On a great note, Emma's MRI from last week came back. She has NOT experienced any more brain damage since her December 2003 MRI. This is very very good news. I am just so happy.

Please keep those prayers coming. Emma has a long road ahead of her and a lot of recovering to do.

Greg

Saturday, May 22, 2004

Emma has been busy and is approaching Day 100. She is going through a series of tests similar to the first few weeks when she arrived at Duke in January. A BAER, EG, MRI and more... Oh and her not so favorite the Nerve Conduction study. Her last day of school and speech are the 28th and day 100 is the 29th.

Greg

Saturday, May 15, 2004

Hello Everyone -


Emma is doing as expected. She visits the clinic two times per week now to run tests on her blood work. She had gained more in size (puffy face and so on) and has a lot more hair (face etc) from the steriods. She isn't too happy about the facial hair but that will pass when the drugs stop in another 9 months. She is quiet these days (not like Emma), needs help getting up from the couch and is now relying on pullups. We won't know how much of this is due to MLD or how much is temporarily due to transplant for about a year. (Crazy I know)

Emma is expected to have her central lines removed at the end of the first week of June and it looks like she may come home around June 9th.

Emma starts a week long series of tests next week similar to the ones during pre-transplant. If all continues well, she'll be home about the 2nd week of June. Emma returns to Duke for another week of tests in August and so on.

Please keep praying. Although there isn't as much going on daily as during the hospitilization, she still needs your prayers to get her through this first year.

Greg

Monday, May 3, 2004

Hello everyone,


Emma is still moving along. Her and her grandmother have been taking walks with Trevor. It is very nice around the apartments with trees, water and more. Emma has had more rashes and we're using creams to work with those. Possibly more GVH as they decrease various drugs. (That is expected) Please keep praying as Emma really has another year to go before things become more "normal" for her.

Greg

Monday, April 26, 2004

Hello Everyone,

Emma is still doing fine and is now going to clinic every other day. She had a small bout with some bacteria but that ended. She is still eating a lot. Her appetite is expected to lower somewhere between day 60-80 so we'll see.

Please keep those prayers coming. Thank you.

Greg

Thursday, April 15, 2004

As those of you have been reading Emma's journals for a while will remember, Emma has really gotten into basketball recently, playing with her dad, Trevor, and Trevor's dad while an inpatient at Duke University Medical Center.

Emma received a neat surprise in the mail today that she will be excited to receive in person soon.....

Our local NBA team, the Golden State Warriors, sent Emma a 'care package.' In it was a signed picture by Thunder, the Golden State Warriors' mascot, whom the girls love. There was a signed photo of Mike Dunleavy, a Duke graduate & also.....

a signed Mike Dunleavy jersey!!

It is funny how much more we have rooted for Mike Dunleavy, Duke & other players and teams from North Carolina since Emma started her treatment at Duke!

We'd like to thank our friends at the Golden State Warriors for these wonderful gifts for Emma. She will definitely love them all!

Greg, Mallorie, and Josie are enjoying their time with Emma in North Carolina this week. Emma continues to do well. Thank you for all of your continued support and prayers. If you haven't yet, please check out a couple recent pictures on the photo page.

Erin

Tuesday, April 13, 2004

Emma is continuing with her near daily clinic work. Emma has blood drawn daily for testing and is in clinic 5-7 days/week. Emma is getting more puffy from the steriods and her appetite is back in a big way. Emma, who rarely eats much, is eating a lot these days. Dr. K continues to adjust her medications constantly to work towards our final goal to stablize the MLD. I have a picture of Emma, Dr. K and Laruen (Nurse Practitioner) to post up later tonight on the website.

All three girls we very excited to see each other. As a father, that is just so neat to see and brings tears to my eyes.

Keep those prayers coming for Emma and the kids on the 5200. We have a ways to go but sure are over the hardest parts. With continued donations, we hope to help support Dr. K and her research to repair Emma's damage.

Greg

Thursday, April 8, 2004

Emma continues to do well and was able to skip clinic today. She remains on isolation from any other kids due to her rash and also as a safety measure.

Mallorie and Josie (Emma's sisters) will be coming out next week to spend spring break with Emma. They all are very excited to see each other.

Greg

Monday, April 5, 2004

Emma’s counts are better today now that the GCSF has been taken away. Emma continues on with daily labs and I’ll know more later on about dropping one day a week of labs. If all goes well, Emma is due to come home May 29th.

Greg

Sunday, April 4, 2004

Emma’s white blood cell count is so high that her doctors have taken her off GCSF. GCSF is a drug that stimulates cell growth. I’m not sure if this is a concern or not going forward. If her labs turn out good tomorrow, her doctors might drop to 6 visits per week instead of every day.

Emma has received so many nice gifts from friends, family and co-workers. Thank you all so very much.

Mallorie and Josie are scheduled to come out and visit Emma in a week.

I’ll let you know how her labs are on Monday.

Greg

Tuesday, March 30, 2004 9:57 AM CST

Emma is doing well.

However, today we would like you to focus your prayers on Emma's friend from the unit, Trevor. He went through his second transplant on February 24 and the initial results are showing that his own cells have grown back again. Trevor and his family need all the love and support they can get, especially after losing Trevor's younger brother Ross so recently. Please think of them all in the coming days and weeks.

www.caringbridge.com/tx/joinerboys

Thank you.

Sunday, March 28, 2004

Hi Everyone!


I'm not sure how to express my gratitude for all of you who have prayed for Emma. As Erin posted a few days agon, Emma has over 98% donor cells. That means her Transplant was a success and she now has a fighting chance against MLD.

I've been pretty emotional the past few days and now am able to update the website. This weekend was very full. Grandpa Potter had a wonderful life celebration with his passing, Emma is winning in her life battle and it is Mallorie's birthday!

Love to you all!

Greg

PS - Rumor has it that you (Grandpa Potter) were watching over Emma as the results came in. Thank you!

Friday, March 26, 2004 3:27 PM CST

Greg will give more details soon, but since I know a lot of you have been waiting for Emma's results to come back today.........

The results are GREAT!!!! Emma has 98% Donor cells! Thank you all for your prayers and good wishes!!

(Again, more from Greg to follow.....)

:)

Erin

Tuesday, March 23, 2004 -- More tonight

Emma has transitioned well into the apartment in Durham. Emma seems happy about that. For the next 45-days (? pending the engrafted cells are the donor cells) Emma will need to go to clinic every day. Clinic runs a long time and today ran from 10am to about 3pm. There are a lot of medications that need to be given and it is a lot of work. Sam mentioned this morning that she felt like going to the apartment was harder than being in the hospital. There is just more to worry about and so on without being able to hit that nurse call button.

We are still praying that her engrafted cells will be her donor’s cells. Keep praying.

Grandpa Potter (Erin's grandfather) would have become Emma's step-great-grandfather later this year. It is with great sadness that we let you know of his passing today. Emma, upon first meeting Grandma and Grandpa Potter ran around like a crazy girl since the "Harry Potter" movie had just come out and she was convinced they were related! Grandpa and Grandma Potter have sent many prayers and good thoughts to Emma over the past few months. We hope that he continues to watch over Emma from Heaven.

Greg & Erin

Tuesday, March 23, 2004

Emma has transitioned well into the apartment in Durham. Emma seems happy about that. For the next 45-days (? pending the engrafted cells are the donor cells) Emma will need to go to clinic every day. Clinic runs a long time and today ran from 10am to about 3pm. There are a lot of medications that need to be given and it is a lot of work. Sam mentioned this morning that she felt like going to the apartment was harder than being in the hospital. There is just more to worry about and so on without being able to hit that nurse call button.

We are still praying that her engrafted cells will be her donor’s cells. Keep praying. We'll know friday.

Greg

Tuesday, March 23, 2004

Emma was discharged today and is now an outpatient. She is very happy. We are waiting for the results of her RLFP test to see if her new cells are donor cells or her old cells. We'll know friday.

Congratulations Emma!

Greg

Friday, March 19, 2004 Day 29, WBC 6.6

Emma is continuing to do well and today at Day 29 she is a WBC count of 6.6. The doctors sent off her blood for the RFLP test to see what percentage of the new donor cells have engrafted versus her own. We should know the results by next Friday.

Emma and the other kids have not been active lately. There is more than one virus on the 5200 and all but 3 (?) kids have been affected. So there have been a lot of restrictions put in place. It has been interesting. I am anxious for Emma to leave here and am praying so hard that her engrafted cells are her donor cells.

Emma misses her puppy Graham a lot. Emma also has been asking Erin for a robot. So, Erin bought her a robot puppy to be her pal. She really likes the new robot puppy however; the new puppy didn’t walk, bark or do what it was supposed to. It turned out that the puppy needed new batteries or “cells”. Emma got a kick out of that. The puppy received new cells but doesn’t do much. Emma has named her robot puppy “the dog that does not do much”. This actually works out fine since she isn’t that mobile. Who knew?

Emma has received so many cards and gifts from you all. Thank you very much. Emma is due to check out Monday at about 1pm EST. She’ll have daily clinic and we all will be anxiously waiting for the results of the RFLP test. As the nurses and most of the doctors up here know, I have found about a million ways to ask the same question to every one of them. “What is the probability of the new donor cells engrafting over her old cells?” It has become a joke around here to see if I can continue to ask the same question in a different way. Oh boy. I finally was able to “extract” a stat here and there and things look good. I doubt they want me publishing that but I can say that the odds are good.

Mallorie and Josie have been here as well and they enjoy being with Emma almost all day long. It has been really neat to see how much the girls love each other. It is wonderful.

Finally, I’ve been doing cap changes, line flushing, blood drawing and more to be educated about Emma’s care. I must say it is a really neat feeling to do these things.

Keep those prayers up!

Thank you everyone!

Greg

Tuesday, March 16, 2004 Day +26, WBC 4.1, ANC 3000+

Things have been a little crazy the past few days so I have missed a few updates. There is a lot going on in terms of planning Emma’s outpatient care etc…

Emma has a WBC count of 4.1 and an ANC over 3000. Some people are starting to ask, what the goal is. Well, if I’m not mistaken above 3 is still in the normal range for anyone her age. However, her immune system is suppressed and could take about 2 years to become fully normal.

We have one more big hurdle to jump. Emma will receive a test to see if her cells are actually cells growing from the donor or her old cells. The test should be ordered on day 30, which is 4 days away and takes a week. If we find her old cells have re-grown, we have to consider starting over. Please keep praying that the cells growing are her donor’s cells. Thanks.

Emma has received some “hall passes” which have allowed us to walk outside the unit into the general hospital. She has to wear a mask but hey, it is pretty cool to leave the unit I must say. On our first venture, we made it only ½ way across the hospital but she is now making it to the clinic building and back.

Mallorie and Josie arrived to see Emma today. Emma was so happy that she cried for a while. Josie was so cute, she got in bed with Emma and just sat there playing cards and putting her arm around Emma for hours. (Josie is the “don’t touch me hug me girl”.) Mallorie and I went out for lunch but headed right back as Mallorie wanted to spend time with Emma. Later I took Josie out for some fun. The girls are really growing up and it is so incredible to see the bond they have. Talk about tears of happiness in a dad’s eyes. J

Emma is scheduled to be released as an outpatient Monday 3/22/2004. I intend to head back to California soon and over the next weeks start to resume a normal routine while caring for Mallorie and Josie. Erin and I are very excited about this, as are the girls.

Emma has received countless gifts and cards from all our friends and family. We intend to thank you all.

Please pray tonight that Emma’s cells are the right cells and please pray that the cells growing for Trevor are the right cells; for that matter, pray for the 5200 block. These kids need it.

Greg

Saturday, March 13, 2004 Day +23, WBC 2.2, ANC 2024

Emma has had a normal day today. She has been active which I think wore her out and so she needed a nap from about 2pm to 4:30pm. She how has a WBC of 2.2 and an ANC of 2024.

Emma was allowed off her pole and TO GO OUTSIDE THE UNIT TONIGHT. Emma and I went out into the general hospital and walked the halls for a little bit. She got tired pretty quickly but was excited about leaving the unit. I took a picture or two so I’ll see if Erin can post one of them up on the site.

The doctors came by today and Emma is still on target for next Thursday to be discharged and in fact the doctor today thought she could go even earlier. The BIG question next is on Day +30 they will do a test to see if Emma’s cells have engrafted or if her new donor cells have. The test takes about a week receive the results. So, we are about 2 weeks out from knowing.

Greg

Friday, March 12, 2004 Day +22, WBC 1.9, ANC 1558

Emma woke up this morning with a WBC count of 1.9 and an ANC of 1558. She has officially engrafted as of 3/10/2004. The doctor’s have targeted next Thursday to discharge Emma. Emma would remain as an outpatient for another 80 or so days here in Durham. She would have daily labs and clinic for most or all of the time.

Emma had a nose bleed today probably from her high blood pressure and bleeding behind her ear. Nurse Kari gave her quick acting blood pressure medication and some more platelets to assist with stopping bleeding. Emma and I did exercises and things are moving along as normal.

Although Erin (my fiancé) is not allowed to visit Emma while she is in the hospital at Duke, Erin loves and misses Emma dearly. She sends her notes and gifts when I see Emma. Erin has been an enormous support for me out here and I wanted to thank her for that.

With continued progress, Emma will be an outpatient at the end of next week and then I’ll be scheduling to go to California for a while. Erin and I miss Mallorie and Josie very much and can’t wait to see them.

Greg

Thursday, March 11, 2004 Day +21, WBC 1.6, ANC 1232

It is now Day +21 and Emma has a WBC of 1.6 and an ANC of 1232. This is really good news and with another ANC above 500 tomorrow, she’ll be considered engrafted.

Emma had a typical day today. She did some homework, had her teacher come for school, played UNO (I lost many times again), listened to music and was free from her pole for an hour to play with Trevor. They played a little basketball but spent most of the time playing baseball. There isn’t much space so it was interesting. Emma hasn’t tried baseball before today but she was able to connect a few times.

Emma also started taking more medications by mouth today as Dr. Martin is eyeing next THURSDAY as the day to discharge Emma as an outpatient. Wow! I received more out patient training today which was cool. (We have about 2 weeks until we’ll know what percentage of the cells in her are donor cells. Keep praying)

As many of you that are out there and read this tonight, please send your prayers, chants and NEW cell growing thoughts for Emma and her friend Trevor tonight. Thanks.

Greg

Wednesday, March 10, 2004 AM Day +20 WBC 1.1 ANC 660

Good Morning Everyone!

I have an early update on Day +20 as there is a lot to share even this morning. Emma has a WBC count of 1.1 today (up from .6 yesterday) and an ANC calculation of 660. All of the signs suggest that the new cells are the ones that are growing. I am very optimistic. We went through our cell growing bedtime routine which includes a daddy kiss on the forehead. Please keep the prayers and thoughts coming for Emma, Trevor and the other kids up here on the 5200. Let’s get these numbers moving!

Nurse Jennifer also taught me how to change her caps on her central lines and flush the lines. The first time is intimidating but pretty cool.

Greg

Tuesday, March 9, 2004 Day+19, WBC .6, ANC 294

Emma started Day 19 with a count of .6 and an ANC of 294. Her cell count and ANC were down from yesterday but that can happen and is in fact normal for some kids. We’re still praying for those new cells to grow.

Emma had school today and speech as well. Emma was given an Alpha smart to start using so that should be fun. Emma also had her weekly Cellmates time. Every Wednesday at 2pm, the kids are caregiver free in the common area with a few social people to play games and other fun things. Emma enjoys that time.

Nurse Jennifer took Emma off her pole later in the day so she and Trevor played in the halls. Nurse Tracy ran them up and down the halls and Janet (Trevor’s mom) chased them with a remote control car. It was pretty entertaining and fun.

I lost at the UNO games yesterday to Emma, Nurse Brooke and Nurse Jill so I owe them Ice Cream. Nurse Jennifer played Emma and won 2 to 1. It sounds like the competition is heating up.

Emma feels ok. She complains that her head hurts a lot and that she is itchy. Overall she is doing very well. She has definitely settled in here. Today when we were playing in the halls she got a little tired and said that it was time to go home. Home to her meant the ‘unit’.

Until tomorrow,

Greg

Sunday, March 7, 2004 Day +17 WBC .5

Emma’s WBC count was .5 today! That is a good number especially since we hovered around .3 for a few days. Emma still has a GVH rash on her hands and feet, which is also a good sign.

Emma had a good day today. Emma spent some time catching up on her homework. She has one more page to go. Jacob had a birthday today so a bunch of the kids went into the common area for a party. We all played bingo and each kid won a prize. After that, Emma and I played UNO (which I lost 3 of the 4 games).

We took a break at about 3pm to make a few phone calls, open cards from Nicole, London and Erin. We watched a little Sponge Bob and then were taken off the pole.

Emma went knocking on Trevor’s door and told him to get off his butt and come out and play. They played a little basketball, did some exercises and played with the nurses. Nurse Donna was showing the two of them how the “tube” system worked here. You can put things in the tube and send them to other stations in the hospital. They had fun putting things in and sending them back to themselves.

We made it back to the room about 5:45pm and did some more homework and then settled down a bit with Sponge Bob. Emma looks a little tired tonight as she was up a lot last night. Hopefully she’ll sleep great tonight.

Now that Emma has a .5 WBC (White Blood Cell) count they will start calculating her ANC number. The ANC is a calculation of a few other numbers with the WBC factored in. If Emma has three consecutive days of an ANC of 500 or over, she’ll be considered for being an outpatient. (An outpatient here at Duke) She could do make this number in a few days or a lot longer. So we are still chanting GROW CELLS GROW (new ones that is) and for her NOT to get sick.

Until tomorrow,

Greg

Saturday, March 6, 2004

Emma slept 15 hours last night and woke up at 11:30am today with a WBC count of 0.4. That is great! She definitely has more energy today that the previous days and the sleep appear to have done her well. Trevor and Janet were out in the halls just after 11:30am so Emma wanted to get her bath in and get going as soon as possible. Trevor has some new things to play with so they played for a while, listened to music and danced a bit.

Emma is back in her room now and should have a good rest of her day filled with reading, activities and more time with Trevor.

Greg

Friday, March 5, 2004 Day +15

Emma has been more tired the past few days as her body is working hard to rebuild with the new cells and repair from Chemo. Emma was out doing her exercises a couple of times today but not for too long. She took a nap so she missed her schoolteacher today. She was awake so she did OT and spent time with her “best buddy”. Emma also played with Michelle for about 45 minutes doing a small project. Emma was free from her pole today so we took advantage of that as well.

Emma and I played a lot of games today and I didn’t win a single one. We played Yahtzee Jr and old witch and she won each time. Apparently there was an “Air Jamaica” trip on the line that I wasn’t aware of too.

Emma has GVH rashes on her hands, feet and a little on her stomach. Her legs and head ache along with constant itching. She does well with all her mouth care and other routine things. She is getting pretty grumpy though. The steroids originally had her very emotional but now she is getting to be a little more grumpy. That is one of the steroid side affects.

Emma was had a White Blood Cell (WBC) count of .3 again today so she said that the “daddy kisses” might not be working. We tried a different spot on her forehead tonight so we’ll see how that goes in the morning.

We have a lot of people out there chanting “GROW CELLS GROW” so please join in. In fact, Erin’s Rotary was even chanting “GROW CELLS GROW” at last weeks meeting.

I’ll let you know her new count tomorrow.

Greg

Wednesday, March 3, 2004 Day 13

Emma is doing well again today. She is experiencing fatigue, nausea, leg aches, rashes from GVH (Graft vs Host disease) and a slight fever. These are all normal signs that her new cells are starting to grow. The “daddy kisses” on her forehead at night for the cells to grow appear to be having a good psychoneuroimmunomodulatory effect. We’ll keep that up. Her counts were .3 today (Normal is about 3. or so), which is great and something to be happy about.

We had a normal busy day today. Emma saw her doctors, did mouth care, photography with Haley, school with Mrs. Trish, OT with Tricia, a blood transfusions, basketball, homework and TV; A busy day.

Some people have wondered how the day progresses in more detail so for those people here goes:

12:55 pm – I arrived to spell Sam.

1:15pm – The doctors made their rounds and said we were doing great. Our WBC (White Blood Cell) count was .3.

1:25pm – We had snacks, a little bit to drink and the parents had donated Pizza.

1:40pm – Haley arrived to take pictures with Emma. They spend time on occasion taking pictures as part of a program here at Duke.

1:50pm – Mrs. Trish arrived to provide schooling for Emma; Reading, writing and other appropriate 2nd grade educational things.

2:30pm – Mrs. Trish finished and Tricia showed up to provide OT services for Emma.

3:00pm – Emma is finished and we decide to take a break and simply rest for ½ hour.

3:15pm – Emma has an upset stomach and throws up.

3:30pm – Emma received a blood transfusion. She is using more platelets, which is also another good sign for things “brewing”.

4:00pm – Emma’s legs ache so she gets Tylenol. (Another good sign) Emma and I chat, play cards and watch some T.V.

5:20pm – Emma is free from her “pole” for about an hour. So we hit the halls to do leg squats, walking and then off to a basketball game with Trevor. I do have to mention something really cute here. Emma was free from her pole first so we did exercises and then she went to Trevor’s door to knock for him to come out. He didn’t come out right then so we walked around, did more exercising and then she said she wanted to come back to the unit. We got in bed and Trevor came knocking. Emma was pretty clear to say she didn’t want to go out. I asked Emma why? She said because Trevor didn’t want to go out earlier. I said what did you want Trevor to do. She said, come out and play. … pause … She then hopped up and said, let’s go out and play with Trevor; Too cute.

6:20pm – Emma is hooked back up to the pole. A church group made dinner for the unit parents/care givers so I went across the hall to bring something to eat back. If you are wondering something nice you can do for others, this is a great idea.

7:00pm – We start bedtime routine with PJs and the like.

8:30pm – It’s lights out. Emma closed her eyes and got her “daddy kiss” on her forehead to help the cells to grow.

All through this the nurses are adjusting her medications and TPN on the pole while adding and taking away other ones. She’ll have check ups throughout the night with her blood work at 2am and results at 4am. Then we’re back up at 8am to start again.

Everything is going well. I’m extremely eager for the 4am results.

Greg

Tuesday, March 2, 2004 Day 12

Emma had a cell count of 0.2. That is cool and up from a 0.1. However, she can jump up and down for a while before stabilizing at a higher number so we’ll see. Once she stabilizes they run a calculation of various numbers to see if she is above a 500 (?) for 3 days to be considered engrafted. Plus, they have to test to make sure the new cells engrafted not her old cells.

Emma was up and ready to go at her usual time. Her GVH is now more pronounced in her hands and is starting in on her feet. That is a good sign that the new cells are doing something. (No Guarantees)

We did mouth care, read a book, got ready and went out into the hallway to do our exercises. Trevor was out as well so we played some basketball but not for too long. Emma seems to lose her strength pretty quickly these days. That can be due to a number of reasons.

Aunt Carolyn was here for a while to play games with Emma and spend more time. Emma and Carolyn really get along so well. We opened a few more cards and items from Erin, Carolyn, a friend down the hall, Laurie from RHI and another RHI item. Emma wants to thank you all.

The doctors continue to tell me that she is moving along very nicely. We’ll see what the count is tomorrow.

Also, people have asked for some more specifics about our day so I’ll start to try to keep a more detailed log so you all have an idea as to how the day goes.

Greg

Monday, March 1, 2004 Day 11

Emma was more energetic today and was up and playing for a while. She did tire out quickly though. Emma had school with her teacher and she had speech. She and Trevor made popcorn and played basketball. Emma also opened a card and gift from Erin, RHI and the Barbens today. She really enjoys that.

Emma has a rash (GVH) on her hands and just tonight it is starting on her feet. She had a slight fever (very slight) earlier, her legs hurt and she threw up twice. All of this is expected when cells are starting to come in. Keep your fingers crossed.

Emma had a count of .1 last night but the doctors today said the instruments aren’t really accurate at such a low level anyway. We expect the counts to start to go up in 14 days from now but things can happen earlier. Please pray and think “GROW CELLS GROW” for her new cells.

Greg

Sunday, February 29, 2004 Day +10

I have watched Emma and Trevor form a special bond. I believe that the bond they formed was to help each other through their transplants.

Emma was not herself today as her cells might be starting to engraft. She has a little GVH or Graft Versus Host disease and that can be a sign that the new cells are starting to “brew.” Emma didn’t get out much today and was very tired. Emma did open some cards and gifts today, which she really enjoys. Erin arrived in Durham recently and Emma opened a nice notebook and address book from her and also started to play with another gift from Kristin. Also, every other day I bring a gift from my work, Robert Half International, to Emma. She really looks forward to when I start my 24-hour shift (every other day) as to what cards and gifts have come. Thank you everyone.

Please pray tonight for all the children on the 5200. There have been parents in the unit whom have recently suffered a great loss. Please think of them in your thoughts and prayers. This is not easy and I can’t even begin to describe it.

Greg, Erin, Emma and Aunt Carolyn

Saturday, February 28, 2004 Day +9

Emma had a good day today. She is looking a more tired than normal and the Chemo affects have definitely set in. She lost most of her hair since yesterday. Joe helped get a bunch of her loose hair off of her head this morning. She has a few patches left now.

She played basketball with Trevor a few times today and they both were able to leave their “poles” for about an hour. They enjoyed that.

The doctors came by today and said that Emma is doing as expected. We just have to keep things beyond clean to make sure that she does not get and infection or some other problem; so far so good. Emma has been itching a lot and has had some skin peeling on her hands but all that is getting a little better now.

Emma’s aunt Carolyn was in today from Grand Cayman. She was excited to see her and they spent the afternoon together.

We’re just waiting for the cells to grow and engraft. They say that for Cord Blood it happens on average day +28 but every child is different.

Grow Cells Grow!

Greg

Thursday, February 26, 2004 Day +7

Emma didn’t sleep so well last night so she was pretty tired today. We went out into the hallway to play basketball at lunchtime with Trevor. Trevor and Emma are definitely getting better at basketball. After basketball we came in to talk to the Doctors and have her checked. So far everything is going normally. We need those prayers and thoughts to keep her doing well. There are other families up here that could use your prayers and thoughts as well. So think of all of the kids here on the 5200 tonight. Thanks.

Emma is complaining a lot about itching everywhere so they are giving her Benadryl at nighttime. She is still eating Doritos all day long. She was very tired so she took about a 3-hour nap and now we’re watching Beauty and the Beast. She’ll go to bed in about an hour and then we’ll start Day +8.

Greg

Wednesday, February 25, 2004 Day 6

Emma had a great night of sleep. She had a lot of itching going on so the nurse gave her some Benadryl and she slept clear until 10am this morning. When she woke up we barely had time to have a bath before Trevor was knocking at her door to come out and play some basketball. We hurried up and she went out and they played ball for about an hour.

The doctor’s came by to say that she is doing well and all the playing and distractions are very good for her. I have been concerned because she is doing so well. However, her engraftment should start in the next few weeks and that should lead to more fevers and other things. Also, we’re only approaching day 7 so a lot of things could be coming that have simply been delayed.

Emma had her photography buddy come by today and she kicked back with some T.V. and Doritos. YES – Doritos are her food of choice! (She is still eating)

We hung up pictures of her time yesterday in cellmates and some more monkey pictures. I plan to take more cards and gifts by tomorrow. She really enjoys the cards everyone is sending. Thank you very much.

OH – She received the “Kick MLD in the Butt!” shirt from the Trimper’s and likes it. When I told her she was kicking butt today she said, “I know”.

Until tomorrow –

Greg

Tuesday, February 24, 2004

Emma is on day +5 from transplant. She is doing very well and the only complaints she has are constant itching and that her stomach hurts. She has a few mouth sores that we think go all of the way through her. (That’s why her stomach hurts) However, she is out in the halls playing, doing homework and staying active without any pain medication right now. I’m completely prepared for things to get much worse and they should have started already. However, it is possible that she could be as she is completely through engrafting. I guess you just never know what might come down the road here. Infections and other things are not good at all so things can change quickly.

Emma had her head shaved again today and is starting to lose some of her hair in the back. Emma was up, did blo-pens art, OT, drew pictures and was the basketball champion today. Yes – she beat Joe, Trevor and myself. The dads are down one again. Emma is only eating Doritos; go figure. She has a great attitude but is confused because she has had her transplant and now wants to go home. It is going to be a while.

Emma really appreciates all the cards and gifts people have been sending. I have read them all to her and they are on her unit walls. She really enjoys them. Thank you all.

Greg

Monday, February 23, 2004 Day +4

Emma had a reasonable day today. Her intestinal sores are starting in through her mouth all the way down. They are more of an annoyance right now but will require morphine or something like that in the days to come. Emma and I got up at about 8am today, had a bath and watched a little T.V. During T.V. she started to throw up. (We’re entering the affects of the chemo phase) She really didn’t feel like going out much so we played games for a while; then she saw Trevor outside. They played basketball for a good 45 minutes. After that, Mrs. Trish came for her schooling.

Greg

Sunday, February 22, 2004

Emma has had a pretty basic day today. She started in with some mouth sores, which is expected. She has been out and about the halls again today and very active. She also had OT for about an hour and then opened some cards and gifts. Emma received a blood transfusion again today since her platelets were low. We are really in the “GROW CELLS GROW” phase of the transplant. We just need to keep her germ free, happy and active for those cells to grow.

(She should feel ok for a few more days before the effects of the chemo set in)

Greg

Friday, February 20, 2004

Today was a pretty normal day. Emma has all but stopped eating now and is on TPN. (TPN is a total nutrition replacement via IV) Emma did some schoolwork, had more meds and then was let off her pole for an hour. Emma went straight to a few other kids rooms to say high through the window and then to Trevor for some Basketball. (She wants to invite Trevor to her next birthday party) They had another fun hour of basketball together. It is really good for them to get out and play.

Emma read some cards that various people sent today and she really enjoys them. The steroids make her pretty emotional so when she read a card from Erin she cried for nearly 20 minutes telling me how much she missed her. Nurse Jill and I calmed her down.

The doctor’s came by today to let us know that everything is going as planned. (Emma also has no white cell count) She is on steroids and a bunch of other medications. She also had high blood pressure so Emma asked for a Dad kiss on her forehead to fix her blood pressure. I didn’t know what she meant but then remembered that a few nights ago when she had high blood pressure I gave her a kiss on her forehead and said it will be okay. Then her blood pressure dropped to normal. So, now the nurses give her a little medicine and she asks for her daddy blood pressure kiss. It is pretty cute. Anyway, I gave her one this afternoon and she watched the monitor and sure enough, her blood pressure dropped to normal. She smiled and said thanks dad; Too cute.

We are hoping for a good weekend but one of these days the real hard parts will start for several weeks, so far so good. Thumbs up!

Greg

PS – Trevor and Emma beat the dads at basketball so we’re looking for a rematch!

Thursday, February 19, 2004

Today was Transplant day for Emma. Emma was up early and got ready quickly for her transplant. The nurses came in to check Emma out and said that the Transplant would happen about 11:30am EST. At about that time, Sam, myself, Pat, Michelle and a few others were all there in the room ready for the big event. The transplant arrived in a small clear bag that looked like fruit punch. It had Barbie stickers on in and a few other little things. We took pictures and then her nurse hooked her up. Over the next 30 minutes, the news cells dripped into Emma. During that time we laughed, blew bubbles and all were very happy. Emma had a great day and some activities later on with her mom and Pat.

The doctors tell me that this is the easy part and the upcoming several weeks are the hard ones. Hopefully she’ll have a great weekend before any of the yucky stuff sets in.

GROW CELLS GROW!

Greg

Wednesday, February 18, 2004

Emma had a pretty good day today. The first of the three days of ATG was the worst with high fevers, a lot of throwing up, rashes and hives. Her hives calmed down a lot today and she had no fevers and only threw up one time. She didn’t feel like being too active and really wanted to stay in bed. That changed when Trevor came knocking on the door to play. She was up out of bed and playing basketball within minutes. Having a friend here makes a huge difference. (I have a picture of the two of them I’ll get on the site tomorrow) After playing for a while it was time for her last 9-hour ATG drip starting at 3pm. Emma was fairly quiet tonight and didn’t eat today. We watched movies and passed the time. The doctor’s say that everything is going according to plan. They also let us know that in about a week additional hard times will come and from what I gather around here it will be challenging for Emma.

Emma also opened cards from Grandma Cindy and Grandpa Mike along with some friends back home. I must say that she really likes the cards. When she reads them she gets very emotional and really enjoys them. At one point Emma got emotional and asked us all here in the room if Erin would do the transplant. I said that if Erin could do it for her she would in a heartbeat. Emma cried and we all said how much everyone loves her.

We are at day –1 and in approximately 12 hours Emma will receive her cord blood transplant. The doctors say the lab will have her cells ready between 10am and 2pm Eastern Time and then the transplant is about an hour drip. After that, our chant is GROW NEW CELLS GROW.

She is missing you all.

Greg

Tuesday, February 17, 2004

Emma had a bit of a rough night. She had hives and a fever of 103 for a good while. I arrived about noon today to give Sam a break and visit Emma. She had been out for a little while in the halls to play, which was great. Her eyes were very red and swollen; not a pretty sight. I stayed with Emma for a few hours while Sam had a break as Sam is staying with her tonight as well. (We tried 48 hours and 24 hour shifts is better) The Cytoxan kicked in and Emma was throwing up every few minutes. She seemed to be getting used to throwing up because in the middle of throwing up she’d look up to watch the next part of the movie we had on; Finding Nemo. She needed lasicks (sp?) because she was retaining too much liquid and Cytoxan. She had that medicine which helped to bring her back into normal levels. That was the last of Chemo! (Although she won’t feel the real affects of the chemo for about another week) At that point Sam was back and Emma started receiving her next dose of ATG. Tomorrow is day –1.

Having said all of that, Emma looked up during a break of being sick and gave me her “thumbs up” sign. That was something Emma and I talked about before the whole transplant started to say – everything’s ok and let’s go! MAX’s saying is “Let’s Kick MLD in the - - TT!” I think that the thumbs up now means we’re doing some kickin’.

Emma is doing better tonight and has settled down a bit and is getting ready for bed now (10pm). Tomorrow should be easier and then it is transplant day. For everyone wondering, the transplant is an IV drip for about an hour.

Greg

Monday, February 16, 2004

Here we are at day –3 (Day 0 is transplant day). Emma had a great night sleep last night and we were up and ready for chemo. (When chemo is over she knew she would be able to head out to the halls to find Trevor) Emma spent the day playing in the hallway and a bunch with Trevor. They really have formed a bond. Emma was released from her “pole” again today and was all over the halls. This afternoon at 3pm Emma started ATG which is a serum derived from horses that kill the human immune system. Now that the Chemo has most likely killed her marrow (bone marrow makes the cells – red, white, platelets etc…) it’s time to knock out her immune system to be ready for the big day.

Emma took a nap at about 6pm and about 7:30pm started with a fever and by 8:30 had thrown up a good 4-5 times. She seems to be handling it well. The good news is what she is experiencing is as planned otherwise there would be concern. The doctor’s say that it will ease up tomorrow and the next day and then set in again about day +4 or so in the transplant timeline. (That’s about when the effects of the chemo hit you)

Kids are amazing. With everything that is going on and knowing that she would not feel well tonight, Emma was able to live in the ‘now’ and have a great afternoon.

Tomorrow should be better for her.

We have new pictures on the photo album link. There is a picture of Emma with nurse Cheryl, her sisters and a recent family photo.

We've had a lot of questions about the transplant. The transplant is an IV drip that lasts about an hour. That's the easy part.

Greg

Sunday, February 15, 2004

Emma was up bright and early today. We got up, took a bath and got ready for the day. Emma didn’t want breakfast and was eager to get her Cytoxan (Chemo) over with at 10am. We walked the halls, did our leg squats and then Emma was taken off of her “pole”. She was “free” in her words for nearly 45 minutes. She tried to run up and down the halls yelling “I’m free”. It was really cute. She then went to Trevor’s room and knocked on the door for him to come out and play. They played basketball for a little while and then it was time for Emma to be hooked back up. Sam and Drew arrived to give me a break. They brought Emma a remote control car and headed back to the halls with Emma. Emma sure had fun driving her car and playing basketball with Trevor over the next two hours.

At 5pm Emma tried to eat dinner but just did not want to eat. I’m noticing that her appetite is going away now. We did our mouth care, played old maid and talked a lot. Emma fell asleep about 9pm (which is early). (We were trying to get our sleep since tomorrow tonight is supposed to be rough) Emma was up a lot during the night because they are giving her so many fluids that her pull-ups were overflowing and I had to change her PJs and sheets a bunch of times. Each time she got up I would take care of her bed and then crawl back in the Murphy bed next to her. She would then start asking me all sorts of questions as if we were on a sleep over camping trip. I have to say that was really nice. She really wants to go home now and she doesn’t understand the amount of time she has left.

Emma starts ATG tomorrow so Monday night is supposed to be rough. Here she goes.

Greg

PS – The secret to mouth care and a few other things is that she wants be to do them first. (The ones I can) Hey – team play.

Saturday, February 14, 2004

Emma finished the Busulfan chemo late last night and started in on the Cytoxin (sp?) this morning. Because she is finished with the Busulfan the nurse took out her NG tube. (The NG tube is a tube that runs from your nose to your stomach so that they could give her meds through it) Emma will have two more days of Cytoxin and on the third day (Monday) start receiving ATG. The Chemo is really to kill off the bone marrow (blood factory) and the ATG kills her immune system. I guess we are gearing up for Monday as that day might make her pretty sick. We’ll see how it goes. We are counting down to transplant day February 19th so we are at day –5.

Emma was up and around today being active as usual. She had some valentine cards and gifts to open. She did her 1-hour of chemo, all the mouth care and received her first blood transfusion. She is eating well too and actually she is eating more here than at home --- during chemo. Go figure. Erin and I got her a few new movies, some candy and a card today. Emma and I watched one of the new movies the Lion King 1 and ½ and then played UNO followed by Old Maid.

The nurses are just great and even spent some time watching the movie with Emma. She just loves them. After dinner and towards bedtime Emma asked if she could go home now. She really would like to go back home and she really doesn’t have the concept of 100 days minimum. (We are at day –5) I know how she feels as I sure miss Erin, Mallorie and Josie. I’ve been out here nearly a month already.

Happy Valentines Day to everyone out there!

Greg

Friday, February 12, 2004

I came to the hospital at 1:30pm today and found Emma playing basketball with Trevor. She has formed a friendship with Trevor on the 5200. She is adjusting to the dilantin and was doing much better today. I could hardly believe it. After Emma was done with playing we went to her room and started our routine. We did mouth care and she talked with Erin & Sally on the phone. After that Emma had homework so we worked on that for a while and then she wanted to go out and play. We headed out and went to the common area and played Yahtzee, read everyone’s signatures on the guestbook and then picked out “stitch” the movie. We headed back and watched the movie and then had dinner. Emma went through more meds and then went to sleep about 10:30pm (After the last Chemo)

This morning (2/13) Emma woke up at 7:45am and was ready to go again. We had breakfast, then meds, then a bath and then Chemo. After that we hit the halls. We walked the halls and at each end did squats. Emma did a total of 40 squats. I did ½ of those and am sore already. That was great. She met Trevor later and played a little basketball.

Emma’s room is decorated with Monkey’s and I found a big Monkey valentine balloon downstairs. So, I got it for her and she was pretty happy about that. At about 2pm, the doctor’s had made their rounds and Drew and Sam were there to spell me.

I am taking the next 2 or more days so I’m headed for sleep. The doctor has said that Monday from about 8pm to 2am will be rough and that it has been easy so far.

Greg

Wednesday, February 11, 2004

The last 48 hours have been eye opening. Emma has spent two nights in the unit now.

Emma was very weak and drowsy yesterday (2/10) from the anesthesia and the dilantin. I got her up a few times to walk around but it was really hard on her. She ate okay but threw up each time they tried giving her Chemo. The Chemo she is getting is called Busulfan and is taken orally. Apparently it tastes so bad that most kids throw up and gag over it. She was able to keep the dosages down but it has taken a lot of time each round.

Due to the meds that she is taking it is hard for her to make it to the bathroom so Emma is using pull-ups now. (Pull-ups are a good thing)

Emma didn’t sleep much on her first night due to the constant meds given throughout the night so last night (2/10) Amy (a nurse) put in a tube from her nose to her stomach to give her all her meds. Emma slept better last night and even through her 2am blood draw and 4am Chemo treatment.

Emma woke up today refreshed and a lot better. She had a bath and was ready to walk the halls for exercise. We walked the halls a few times, did our mouth care, more Chemo and so on. She didn’t throw up today and even made it to the bathroom a few times. At the end of the day, she needed to be carried to the room because she wore out walking the halls.

The doctors came by today and said that all of Emma’s progress is right on track (Day 3). They said this week should be easy and then towards the end of next week things will be really hard.

I know that other families are going through some hard times today and I want to wish them the best.

Greg

Monday, February 9, 2004

Today was Emma’s first day on her transplant regimen. Emma checked in at 8:15am to have her central lines put in. These are tubes that are outside her chest and go into her main artery of the heart. She did great. When she woke from the procedure she had a light on her finger and said she was ET phoning home. She also gave me the big thumbs up and asked if she did “good”, I said yes you did.

Emma was really happy to move into her transplant unit. She is really geared up for the whole procedure. She has a little anxiety about various things that people are doing and is concerned if they will hurt but all in all she is just ready to take it on.

Once Emma settled in, she turned on Harry Potter and looked really tired. Sam is spending the night tonight with Emma and I’ll spend the night tomorrow. Erin, Mallorie and Josie are in California.

Emma starts Chemo at 4am!!!! Here she goes!!!! As Emma would say, “GROW CELLS GROW”

Greg

Friday, February 6, 2004

Emma had school today with Trish and Erin and I were able to take a tour of the transplant units. There are two big doors that secure a small area before entering the units. The doors cannot be open at the same time. In this area the parents are to change their shoes and wash their hands for 15 seconds before going through the next door. Once inside, there are 16 small rooms and outside of each room is an alcohol bottle to touch up your hands upon entering a unit. Erin and I were able to see an empty room today and there is a chance that room would be Emma’s but we’re not sure.

The room has a Sony Play station, a VCR and TV in it. Emma would be able to watch DVD’s and TV. There is a chair in the room for a parent on call to sit. (One parent has to be with her at all times) There is a small bed for one parent to spend the night with Emma along with a private bathroom for Emma. Down the hall is a common area for the kids to socialize with other kids if they feel like it. Next to that there is a parents room to take a break when needed. It is definitely a clean place but not the ‘bubble’ we had imagined.

As we were leaving two clowns arrived and were putting on a show for one of the boys there. I never realized how much that meant to the kids until now.

Greg & Erin

Wed, February 4, 2004

Today was a big day. Sam and I had a meeting with Dr. Kurtzberg, Susan and Jayne for a few hours to discuss all the final results of the tests. Emma’s blood and urine tests confirmed that Emma has MLD. Emma’s MRI from December and from a week ago were compared by a radiologist and found to have had no change. Emma also suffers more cognitive damage versus motor skill damage, which is not common in MLD. The cord blood stem cells have a better chance at helping the cognitive damage over time. (???) The hope now is that Emma will start a plateau with her MLD and be ready for the transplant. Since it takes many months for the cells to cross the blood brain barrier, everyone’s hope is that they will kick in during this potential plateau. MLD symptoms/damage comes in erratic waves and my gut says she is just finishing a ‘wave’. (Nobody really knows though)

I am very relieved to hear this news as it opens up the door for the stem cell transplant treatment. Last night Sam and I both signed the consent to start treatment on Monday.

Emma now has four days of fun ahead of her before entering the hospital. Erin and I are taking Emma for the day tomorrow to do more fun activities.

Tuesday, February 3, 2004

Mallorie and Josie were scheduled to leave today to go home but weather conditions in Chicago prevented them from leaving. Erin and I were able to spend this afternoon and evening with all three girls and really had a good time. We played Uno, War, Yatzee, golf and even a few games of pool. Emma, being herself, made a new friend today and spent time playing with her as well.

We are still waiting to hear the results of Emma's urine test to fully confirm the MLD diagnosis.

Greg, Erin, Mallorie, Emma and Josie

Monday, February 2, 2004

Yesterday, Erin and I took all three girls to paint ceramic arts in Chapel Hill. All of us then went to the North Carolina Museum of Life and Science in Durham. The girls were able to dig for fossils and found a couple slightly unidentifiable items! They had a lot of fun there.

Emma had a Urine test today that will confirm MLD. That sample will be sent to Dr. Wenger in Philly to be tested. Emma also had school today. Her teacher meets with her one on one for her educational needs. Emma meets with Mrs. Trish everyday for about an hour in her unit.

Thank you all for your support and warm wishes.

Greg, Erin, Mallorie, Emma and Josie

Friday, January 30, 2004

I got to meet Dr. Kurtzberg today for the first time to review all of Emma’s tests. At this point, Dr. Kurtzberg feels as if Emma has MLD but we have to wait for a Urine test to come back about mid next week; Friday at the latest. Emma appears to be moderately affected by a Leukodystrophy, mostly likely MLD. (There are significant discrepancies in the California labs so Duke has had everything redone)

To end the day, Erin and I took the girls to Toys-R-Us so Emma could spend her gift certificate from Erin’s ChevronTexaco co-workers and then to the Macaroni Grill for a nice dinner.

Greg, Erin, Mallorie, Emma and Josie

Thursday, January 29, 2004 23:00 EST

Emma had an EEG, BAER (brainstem audio-evoked response) and VER (visual evoked response) tests today. They were scheduled for a few hours but actually ended up taking about 8 hours. It was a long day for Emma but she did great and may be done with all the pre-tests now. All of the test results will go to Dr. Kurtzberg for a meeting tomorrow afternoon. That meeting is important because we’ll find out if Emma needs more studies and if she is a good candidate for the transplant.

Wed, January 28, 2004 22:35 PM CST

(The day and date were wrong on the last one)

Emma had her eye appointment today and everything checked out perfect. The doctors suspected that she might have double or triple vision due to MLD nerve deterioration so the results of this appointment were good news.

Sam and I met with Jayne again to go over the chemo regimen and spent nearly two hours going over the details, how Emma would feel and what to expect.

Erin arrived at 2am today. Erin and I took all three girls out to a dinner of their choice. Josie was first to give her vote of crab, shrimp or lobster. (Her favorites) We all went to the Red Lobster and the girls had a great time. Since Emma’s EEG is tomorrow at 10:30am and she needs to be somewhat sleep deprived, we all went to see Peter Pan. That had a great night.

Greg , Erin, Mallorie, Emma & Josie

Thursday, January 26, 2004 23:32 PM CST

Emma had her eye appointment today and everything checked out perfect. The doctors suspected that she might have double or triple vision due to MLD nerve deterioration so this appointment was good news.

Sam and I met with Jayne again to go over the chemo regimen and spent nearly two hours going over the details, how Emma would feel and what to expect.

Erin arrived at 2am today. Erin and I took all three girls out to a dinner of their choice. Josie was first to give her vote of crab, shrimp or lobster. (Her favorites) We all went to the Red Lobster and the girls had a great time. Since Emma’s EEG is tomorrow at 10:30am and she needs to be somewhat sleep deprived, we all went to see Peter Pan. The kids had a great night.

Greg , Erin, Mallorie, Emma & Josie

Tuesday, January 27, 2004 5:29 PM CST

There was a lot of ice today and it was pretty cold here. It took a few extra minutes to get to Emma’s first appointment. Emma’s first test was at the South Clinic for a Nerve Conduction Study. The doctors attached some wires to Emma’s feet and hands. They then ran low-level tests increasing to higher levels. Emma really didn’t like this test because she said it hurt, as the tests got higher to levels. Emma said she knew it was important and was a real trooper. She did great.

Sam, Emma and myself met with Jayne today (Transplant Nurse Coordinator). Jayne went over more education on the dos and don’ts for the 5200 units. (The 5200 units are the transplant-isolated units)

Emma met the Trimper kids Maddie and Sam. They were great at answering Emma’s questions. They also showed Emma their central lines so she would know what to expect. I think meeting these kids was really good for Emma. I could tell she was processing a lot and had great questions.

Pat brought Mallorie and Josie to NC. Mallorie and Josie were able to tour the transplant unit with Jayne and then meet the psychologist. I think this was great for Mallorie and Josie. All three girls really were happy to see each other.

Emma’s MLD Foundation website went live today with a simple splash page. Over time we’ll have a lot more pictures and information about Emma along with fundraiser event schedules. http://www.emmasfoundation.org. (A mailing list will be available in the next few weeks for you to sign up and keep informed)

Greg

Tuesday, January 26, 2004 5:22 PM CST

Emma had an echocardiogram and a pulmonary function test today at CHC. The hospital was virtually bare due to the snowstorm. There was 4 or 5 inches of snow and the state declared a state of emergency. The airports and all the stores around were closed. The hospital was open and Emma was able to zip through her appointments. During one of her appointments, Emma met two other little girls that had their transplants a few years ago and where here for a check up. They are doing fine and there was even a news crew out here interviewing them.

Hopefully there will be less snow tomorrow.

Greg

Saturday, January 24, 2004 10:56 PM CST

Watch out North Carolina - everyone is on there way to see Emma....

Greg arrived in Durham today. The Hilton treated him extremely well after I hooked him up with the Hilton Gold card! ;) Greg hopes to see Emma tomorrow & we'll have a more thorough update of her information.

Pat (Emma's maternal grandmother) is flying out with Mallorie & Josie on Monday.

Mallorie is at a Girl Scout camp this weekend. Josie has had a great time (being the only kid at home) hanging out with Scott & Diane (Greg's parents) and me today. Though, earlier this morning, she did say she was bored because there was no one around to play with!

Erin

Thursday, January 22, 2004 11:28 PM CST

Emma has had a variety of tests and has met a bunch of great people at Duke the last two days. Emma met Dr. Kurtzberg, Director of Pediatric Stem Cell Transplant at Duke University Medical Center today. Sam said that Dr. Kurtzberg was very down to earth and very reassuring.

Tomorrow (Friday), Emma is scheduled for another MRI. Greg will be taking the MRI done on 12/29/03 (Oakland Children's hospital) with him on Saturday when he goes so they are able to compare the two MRIs.

Greg and I took Mallorie and Josie to Benihana tonight. That's a special place we like to go for dinner. Since Greg is leaving Saturday, we thought it would be a nice dinner for the four of us and it was. We had a great time!

Erin

Wednesday, January 21, 2004 12:14 AM CST

Emma had a day full of tests in Chapel Hill, NC yesterday. She met with the child development team at the Center for Development and Learning. Since the tests started so early (7:20 EST, 4:20 PST), they were looking forward to getting some good rest last night!

I wanted to take the chance to thank my team at ChevronTexaco. Last week they gave me a huge teddy bear, that had an Emma necklace on it, a $75 gift certificate to Toys R Us, and a very touching card. Eleanor, a coworker of mine, and her daughter also put together some items for Emma, including a cute purse, with stationery, pens, playing cards and more. Of course, I was in tears when they gave me all of this for Emma. We'll be bringing it back to North Carolina when we go. :)

Again, everyone's support is SO appreciated!

Erin (& Greg)

Tuesday, January 20, 2004 11:11 AM CST

Emma, her mom and aunt arrived safely in North Carolina last night.

Emma's first appointment is at 7:20am EST (4:20 our time). Wow - I bet they'll all be tired today!

We wanted to thank everyone again for all of the wonderful thoughts you have shared in the guestbook. It is just great!

Also - Pete, a co-worker of Greg's, brought by a homemade lasanga dinner, with bread & salad to us over the weekend. It was wonderful! We are really touched by everyone's generosity. :)

Erin & Greg

Monday, January 19, 2004 11:05 AM CST

Emma, her mom, and her mom's sister are off to North Carolina today!! Hopefully they will have a safe and pleasant trip.

It sounded like Emma had a great weekend with her mom. Emma called Greg and I to say hi on Saturday, while she was out getting her nails done with her Grandma Pat and younger sister Josie. :) Last night, we heard that there was a going away party at her mom's house. I'm sure she had a great time!

Greg is finalizing some issues we've come across with the insurance & should be heading back to North Carolina soon.

I was thinking that it could be pretty crazy in North Carolina since the Panthers are heading to the Super Bowl!

:)

Erin

Saturday, January 17, 2004 10:30 AM CST

Yesterday was such a special day for Emma!

Her class had a get well party for her in the afternoon. The classroom gave her a few wonderful gifts, including a monkey and some outfits from Build-a-Bear and a pillowcase on which each of the kids put their handprints & name. There also was a book put together with a card from each of her classmates. I'm sure she'll look at it often!

Emma's big sister, Mallorie, and her friend Megan also had Emma's classmates sign their names on one side of a different pillowcase and had friends & family sign the other side. Emma sat on her Grandpa Scott's lap (on a rocking chair in the classroom) as she opened her gifts.

At the end of the party, everybody stood in a circle on the grass outside the classroom. Each of Emma's classmates received a balloon. Emma then stood in the middle of the circle. Everyone made a special wish for Emma to get well soon and let their balloon go right after Emma let hers go. It was very touching.

Josie (Emma's younger sister) and Mallorie were able to leave class to come to the party, as well as Greg, me, Greg's parents, Greg's brother Chris, Emma's mom and Grandmother Pat. There were many other mothers in the room helping, as well as the Principal, Emma's resource teacher, and Emma's speech teacher. We are so appreciate to Mrs. LaMaster, Emma's teacher, and everyone who helped put the party together. It was such a great day for Emma. :)

Erin

Thursday, January 15, 2004 11:37 AM CST

Yesterday was a busy day. Greg & Sam met with doctors at UCSF.

To further clarify, it seems that there are 3 types of stem cells:
1) Bone Marrow stem cells
2) Peripheral blood stem cells
3) Umbilical cord blood stem cells

http://www.marrow.org/MEDICAL/sources_of_stem_cells.html

As I understand it, UCSF seems to do transplants mostly with #1 & #2, whereas Duke has been doing more procedures with #3.

UCSF discussed that Josie, Mallorie, and Greg are not possible donors for Emma, but that Sam may be (further tests are being run).

Greg has a number of questions for Dr. Kurtzberg, from Duke, and Dr. Cowan, from UCSF. He'll be talking to both later today.

Also - Greg's parents left Vancouver, Canada yesterday & arrived at our house last night. WOW! Emma is home spending the day with them today. :)

Thanks for all of the support for Emma and our family through the Guestbook and all of the e-mails we have received. We really appreciate it!

Erin

Tuesday, January 13, 2004 10:33 AM CST

We had a family photo session this past Saturday. The photographer, Dirk, a member of Erin's Rotary club, asked Emma how she was feeling about going to the hospital. Her response was, "I was a little scared at first, but now I'm getting the hang of it."

As cute as ever.....

Greg and Erin

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